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, April 30, 2014

App calculates Vitamin D intake from sun exposure

As one of my doctors, Dr. W., has repeatedly emphasized, people with ME/CFS are almost always low on Vitamin D and need supplementation.  I tested quite low on blood tests and have since been supplementing with 5,000 to 10,000 IUs per day until my vitamin D levels returned to what's often considered the "optimal range" -- in the 60s and low 70s.  I continue to take that same dose for maintenance, and I believe it has helped.  

On a day when I receive virtually no sun, I will always take 10,000 IUs.  If I get some sun exposure, I will usually reduce my intake to 5,000 IUs or less.  However, I was always unsure of how much to reduce my supplementation on days when I received significant sun exposure.

Someone on HealClick recently posted about an app that helps with that.  It factors your location, time of day, time exposed to sun, percentage of skin exposed and some other parameters and calculates how many IU's of vitamin D you received.

Here's the description of the App by its creators:  
"The idea behind this application is that it will help you track and manage your Vitamin D.
You setup basic information one time, like your height and weight and skin type and then any time you are outside, during the prescribed hours (and parts of the year), you can have it compute the amount of D you are getting in a stopwatch interface. It will also track how long you can stay out and warn you when the time is up. 
The application will notify you with the next opportunity to generate vitamin D.
Each day, you can see forecasts based on your location, and you can also see the solar position, [and] your generated vitamin D vs. target etc."
Here is a link to the Apple version of the app.   And here it is for Android.

There's also an interesting little YouTube video about Vitamin D and sun exposure from the makers of the app.  I learned a few things from it.  It's worth a watch.

I've just downloaded the app so I haven't had a chance to use it yet.  I'll come back and add a review after I've had a chance to 'take it for a spin...'

Thursday, April 24, 2014

The case against Aspartame

One of the few good things to come out of my health problems is that I've become more aware of health and nutrition.  I have tried to spin the negative of my health problems into a positive by educating my family and close friends (subtly, and hopefully without becoming annoying).  My hope is that, because of my health problems, my family and friends can potentially avoid problems of their own.

While I've had some small successes, I've found that for the most part, people aren't very motivated to change their lifestyles or diets unless they experience health problems of their own. Case in point, my parents are both regular consumers of Aspartame (aka aspartate).  I have been trying to convince them to ditch Aspartame (along with sugar - for different reasons.)  My dad responded that he searched the internet for "dangers of Aspartame" and discovered nothing of significance.  I found that hard to believe.  So my dad challenged me to show him the links.  This post is my effort to do that.

First: For many years, controversy surrounded Aspartame and whether it was a carcinogen (a cancer causing substance).  Controversy also surrounded the FDA approval of Aspartame, which may or may not have been tainted by "irregularities" and suspicion in the process.  Over the years, research into the potential cancer-causing affects of Aspartame has found that Aspartame is probably not carcinogenic in small amounts.  Some still dispute this, but I am sufficiently convinced.  The unfortunate consequence of these findings is that, it seems, the message has mutated into "Aspartame is completely safe."

What's been lost are the other potential health hazards of Aspartame, namely that it has been repeatedly found to kill nerves, leading to or exacerbating nerve-related diseases like Alzheimer's, Parkinsons, MS, ALS, ME/CFS, and others...

There are far too many links and research papers to include in one blog post, so I will include only a few highlights.  After each link, I quote a key paragraph from the source.  But keep in mind that most of these links have a trove of information about Aspartame that goes well beyond the excerpts:
"Aspartate and glutamate act as neurotransmitters in the brain by facilitating the transmission of information from neuron to neuron. Too much aspartate or glutamate in the brain kills certain neurons by allowing the influx of too much calcium into the cells. This influx triggers excessive amounts of free radicals, which kill the cells. The neural cell damage that can be caused by excessive aspartate and glutamate is why they are referred to as "excitotoxins." They "excite" or stimulate the neural cells to death."
[The article goes on to say that nerve death due to excitotoxins is linked to, among other things, Alzheimer's disease]  
"Aspartame, a widespread sweetener used in many food products, is considered as a highly hazardous compound. Aspartame was discovered in 1965 and raises a lot of controversy up to date. Astrocytes are glial cells, the presence and functions of which are closely connected with the central nervous system (CNS). The aim of this article is to demonstrate the direct and indirect role of astrocytes participating in the harmful effects of aspartame metabolites on neurons. The artificial sweetener is broken down into phenylalanine (50%), aspartic acid (40%) and methanol (10%) during metabolism in the body. The excess of phenylalanine blocks the transport of important amino acids to the brain contributing to reduced levels of dopamine and serotonin. Astrocytes directly affect the transport of this amino acid and also indirectly by modulation of carriers in the endothelium. Aspartic acid at high concentrations is a toxin that causes hyperexcitability of neurons and is also a precursor of other excitatory amino acid - glutamates. Their excess in quantity and lack of astrocytic uptake induces excitotoxicity and leads to the degeneration of astrocytes and neurons." [Emphasis added]
In conclusion, there is compelling evidence to indicate that food additive
excitotoxins, such as aspartame, pose a serious danger to our well being,
especially so in the case of children and the elderly. It has been
demonstrated that excitotoxins in the diet can dramatically elevate free
radical generation for prolonged periods of time and that once induced, it
triggers a viscous cycle that ends in neuron death. Most authorities now
agree that elevated free radical generation is associated with virtually all
degenerative diseases as well as most injuries and toxins. It makes little
sense to expose the general public to a product that we know increases free
radical generation so dramatically and is associated with laboratory proven
injuries to the nervous system.
Aspartame can change the chemistry of the brain. Formaldehyde, a product of methanol, gathers in certain areas of the brain causing degenerative diseases such as Parkinson's, Alzheimer's and ALS. Aspartame consumption can also trigger seizures in both epileptics and other individuals without a history of epilepsy.  Aspartame may contain fewer calories than sugar, however, the toxic sweetener has the potential to cause serious damage to the nervous system and in the worst case scenarios can be fatal.

I could go on and include many others, but the point is made.  To be fair, there are sources that refute these findings (specifically the FDA), but it's interesting to note that none of them (at least that I have found) attempts to explain why the chemical process described above is wrong.  The response is generally, to paraphrase, "we haven't seen enough evidence to be convinced."

I've read the FDA's arguments of why Aspartame is safe, and I am not convinced.  I will not include those arguments here because I don't want to lend credence to them.  I'm not trying to be objective here, but, suffice it to say, if you want to read the other side of the argument, it is out there for you to find.  

Friday, April 18, 2014

Doubling down on Methylation

I started Dr. Yasko's methylation protocol in about March of last year.  Yasko recommends that patients implement supplements in phases.  She stresses they be implemented in a specific order and then results confirmed with tests before moving on to the next phase.  So it took me over six months just to build up to the point where I could start actually taking methylfolate and B12.

I took a step up in baseline before I ever even started taking B12.  The "step up" occurred in about September last year after I implemented Yasko's "short cut" supplements - mainly PS Complex and DHA.

I didn't really notice much of a difference after I finally added B12 and methylfolate, but I continued to do relatively well.

Toward the end of 2013, I moved residences and lost focus on methylation.  I continued to take the supplements, but didn't monitor my health as closely.  I stopped reading and learning about nutrigenomics, and stopped paying attention to how missed doses affected me.

In February and March this year, brain fog and limb numbness returned after an absence of about a year.  By accident, I noticed that on a couple of days where I forgot to take B12 and methylfolate, the brain fog and limb numbness disappeared again.  So it became clear that I was over-methylating - the methylation cycle was working too fast.

Now I'm off the B12 and methylfolate again (temporarily) and am going to figure out where things started getting side tracked.  At some point I unknowingly switched from taking the hydroxycobalamin form of B12 to methylcobalamin, which can be problematic for CBS+ persons like myself.  This may be why I was overmethylating.

As part of my re-dedication to methylation, I decided to read Yasko's new book, which supposedly makes complicated nutrigenomics a little more accessible.  I'll review it in a later post...

Wednesday, April 9, 2014

Dr. C is frustrated....understandably

I had my latest appointment with Dr. C yesterday.  As usual, we spent more time talking about the landscape of ME/CFS research than we did about my own health, which is fine by me.  The man is fascinating.

As usual, everything below is paraphrased, including quotes, and it is always possible I misunderstood something.

D-Ribose: Why it Might Work

We briefly discussed the supplements I'm taking other than those he recommended.  I mentioned D-Ribose.  He said he'd been thinking lately about why D-Ribose seems to be helpful for so many patients.  He believes that it supplies a substrate that the enterovirus is consuming.

Ribose, he says, is a precursor of nucleic acidthe body processes it to make nucleic acid. Deoxy-ribose goes into DNA, and Ribose goes into RNA. The viruses sit on the mitochondrial membrane and, from there, they "suck in" whatever they need in order to replicate, including ribose.  So he believes that when we take D-Ribose as a supplement, we are replacing the Ribose that the enteroviruses rob from our cells.  Otherwise our cells become depleted of Ribose.

The Slow Development of ME/CFS Treatments

We next discussed his experiences sitting on the "Treatment" panel at the IACFS Conference a couple of weeks ago, along with four other respected clinicians, including Dr. Klimas.  The panel presented hypothetical cases of ME/CFS patients to the audience of physicians and asked how they would treat those patients.  While opinions varied, there was a general consensus surrounding just four treatments, all simple supplements: Vitamin B12, Vitamin D, Coenzyme Q10, and Magnesium.

Dr. C looked at me exasperated and said, "This is 30 years down the line [of ME/CFS research]. And that's all we got!"  His frustration on behalf of patients was remarkable.  He gets it.  

                                                                        On Valcyte

Dr. C mentioned that one of the presenters at the Conference (probably not the one you're thinking of) is always a big proponent of Valcyte.  When a patient has "high" HHV-6 antibodies, this doctor prescribes Valcyte.  Dr. C said that he does not agree that Valcyte is effective for the treatment of ME/CFS, and does not agree that the HHV-6 antibody numbers he sees in ME/CFS patients are indicative of HHV-6 being a cause of ME/CFS.  "In reality, the antibody numbers aren't that high," he said.  He also mentioned his belief that the toxicity of Valcyte makes it not worth the risk.

On a personal note, I have a few friends who swear by the effectiveness of Valcyte, so I'm not saying I agree with Dr. C.  As with everything here, I'm simply passing along his opinions.   

Dr. C's Frustration

If you've read my past blog posts about Dr. C, you know he basically believes he has proved (my word, not his) that ME/CFS is caused by enteroviruses, but he can't get anyone interested enough in his work to try to reproduce his findings.  He said that several patients asked him in open session at the Conference, "why hasn't anyone reproduced your work?"  He said he responded honestly: "I guess they don't think much of it!"

He also expressed frustration that researchers are still wasting time looking for viruses in the blood of patients. The viruses are cleared from the blood very quickly and take up residence in the tissues. Therefore, he believes any "virus hunting" will be futile unless it focuses on tissue biopsies.  


Drug companies have to spend at least a billion dollars to research and develop a new drug for an ailment.  No drug company, he says, will ever be interested in investing that kind of money unless/until there is consensus about what causes ME/CFS.  (Implicit here was that if someone would just try to reproduce his findings, they'd see that he is right and progress would start to move very quickly.)

At the Conference, however, two groups finally came forward and expressed some interest in looking into his enterovirus work: one was WPI and the other was a geneticist and molecular biologist from Cornell University, Dr. Hansen.  But in both cases, they wanted to work off of Dr. C's tissue samples, rather than collect samples of their own, which I suspect will reduce the value of any of their conclusions.  Dr. C seemed cautiously optimistic about this. 

He also mentioned that the Centers for Disease Control (CDC) has recently become "interested" in studying his samples.  To my surprise, he said that if he had a choice, he'd most like to send his samples to the CDC.  "This is what they do best," he said.  They have enormous labs, teams and resources that are probably the most capable of following up on his work.  

As part of this discussion, Dr. C also stated that when he tests tissue samples of patients after they have been on Equilibrant for a while, they no longer find the RNA that is indicative of enterovirus infection. This is why he believes so strongly in the ability of Equilibrant to suppress (but not eliminate) enteroviruses in ME/CFS patients.  

Dr. C also said he spoke with Dr. Lipkin at the Conference, whom he praised highly and called "very, very impressive." Dr. C believes that Lipkin has an open mind and is interested in Dr. C's theories.  If he can get Lipkin to follow through, it could be a huge breakthrough because Lipkin apparently has the lab, resources, funding, name recognition and support to make a much bigger impact if/when he confirms Dr. C's research.  

Dr. C believes that, while Lipkin previously looked for viruses in ME/CFS patients, he did not (I'm paraphrasing heavily here) calibrate his instruments with sufficient sensitivity for RNA.  The implication was that, while Lipkin's results were useful for ruling out a number of potential viral causes, they do not rule out Dr. C's enterovirus theory.  Dr. C said that the head of Lipkin's lab later told him: "whatever parameters you want us to use, we'd be happy to do it."  Dr. C seemed hopeful about this.  

                                                                       Gamma Interferon

Dr. C was also eager to discuss the research results (which he said are not new) that ME/CFS patients who have been ill for less than 3 years have levels of Gamma Interferon that are 1000x greater than the average person.  Gamma Interferon is a protein that the body produces to boost the immune response.  He said, "you can imagine what all that Gamma interferon does when it floods different areas of your body, like the brain."  

"When we finally learn how to shut down the excessive Gamma Interferon response, that's when you will start to feel better." 

For unknown reasons, the levels of Gamma Interferon tends to drop off after 3 years, and yet patients remain ill.  He has noticed however, that the three year mark is often a transition point for many patients, where they stop having "viral symptoms" (i.e. sore throat, swollen lymph nodes, etc.) but often descend into a deeper state of fatigue.  He theorizes that the immune system, even in its weakened state, eventually wears down the viruses enough so that they no longer result in "viral symptoms."  But at the same time the immune system itself becomes worn down.

Automimmune Characteristics

He also gave an acknowledgement to Dr. Rose's findings that, as time goes on, ME/CFS patients become more and more likely to develop co-morbid autoimmune diseases.  Tying this into his own theories, Dr. C believes that the protein emitted by the double stand RNA enterovirus is what the immune system attacks.  Over time the RNA will mutate and the protein will change.  Given enough time, it's likely that the protein will sometimes evolve to resemble "self."  Now the immune system starts attacking not only the RNA protein, but you.  

Tuesday, April 8, 2014

Neuro-inflammation confirmed in ME/CFS.....again

Japanese researchers used PET scans to confirm a sort of "signature" type of neuro-immune inflammation that is only seen in ME/CFS patients.  File this under:  "things we kind of already knew but it's still nice to see confirmed again..." 

Monday, April 7, 2014

IACFS Conference notes now available as a Google Doc

The IACFS Conference notes from a couple of weeks ago are now available as a Google Doc for better readability.  Here is the link.

Food tasted better before ME/CFS

This past weekend I pushed hard...maybe harder than I have since first getting ME, and that includes the day in November I moved houses.  The task for the weekend was supposed to be simple: re-seed a few bare patches of lawn.  I figured I could do it without too much effort.  I would simply pace myself and try to stay under my aerobic threshold, thereby avoiding post extertional malaise (PEM).

Never have I underestimated a task so much.  Even as I sit here now, I can't figure out why the re-seeding job took so much time and effort.  It just...did.  But as so often happens, when I am actually engaged in a task, my body  rises to the occasion, so it's easy to forget about the PEM that will surely follow in a day or two.  What made it even easier to ignore the future consequences was that my two and a half year old daughter was "helping" me and I realized that these precious father-daughter bonding moments are rare.

(As I write now, I still feel fineabout at my baseline.  I am waiting to see what price I pay.)

Around 4:30 p.m. I had finally finished the job and I went inside the house for a snack.  I made a snack that I eat nearly every day: a simple CB&J (cashew butter & [scant] jelly) on "Paleo bread".  But, man, did that sandwich taste good.  It was as if I was eating a CB&J for the first time.

I had forgotten about how much better food tastes when one really works up an appetite through hard physical labor or exercise.  It's as if the physical activity awakens dormant taste buds.  That sandwich tasted so good I almost felt like weeping.

And then there was the matter of my sleep.  I slept so deeply and soundly last night it felt like the whole night passed in 15 minutes.  I miss that feeling too...