Low potassium confirmed

Last week I wrote a post about how I had used my daily health chart to solve the mystery of a mysterious crash.  I had pinpointed the cause to low potassium.

This week I received the results of a Urine Essential Elements test, which I submitted to Dr. Yasko in early March. Written all over the results, in Dr. Yasko's handwriting, was "Potassium is needed" and variations on the same.  It was nice to have that official confirmation.  I was right.

I'm reminded again that, while these various supplement and treatments help, they require a careful balance that has to be monitored periodically.  We're experimenting with "repairing leaks" and "patching holes" in ways that that simply don't have much history.  There's no manual.  Because of that, I sometimes feel like I have to treat my health maintenance like a job.  

A few quick thoughts on the first day of the IACFS Conference

Here is "Searcher's" summary from PR of the first day of the IACFS Conference

It seems as if the speakers who also spoke at the previous day's Stanford Symposium gave more or less the same presentations.  So if you've already read the summary of those presentations, you can probably skip summaries of those same presenters.

The most interesting presentation here, in my opinion, is by "virus hunter" Ian Lipkin.  Among other things, he says:  "It’s not actually an infectious disease but immune response."  It seems that more and more, this is where the research conclusions are heading.  It may be that sometimes there is an infectious trigger (while for others it's chemical exposure, injury, mold), but once the immune system derangement is triggered, the disease is more about the problems that stem from a faulty immune system.

There seems to be a split approach among the speakers:  There are those that present their most recent findings, and those who sort of summarize a career's worth of observations about ME/CFS.  To me, the more interesting presentations are those that summarize their most recent research:  Klimas fits that mold.  If you're short on time, I would read the summary of her recent work (on Natural Killer Cells), plus Lipkin's.  And of course Montoya from the day before (on cytokines).

Updates from this weekend's Bay Area ME/CFS conferences

Starting Wednesday and running through the end of the weekend, the San Francisco Bay Area is hosting a series of ME/CFS conferences, starting with the Stanford CME Symposium, followed by the IACFS annual conference in San Francisco.

A friend of mine, blogging as Searcher, has posted a summary of yesterday's proceedings on Phoenix Rising.  She will continue to blog for PR throughout the weekend.  I think all patients should be keeping up with this weekend's events--they have such huge implications on our future.  It is a long summary, and everyone will likely find interest in different findings. 

If you're short on time or are too brain fogged to read the whole summary, I would skip ahead to the summary of Dr. Montoya's second presentation, about halfway down the page.  His cytokine study will be talked about endlessly in the months following.    

For a more paraphrased but perhaps more digestible series of Tweets, Cort Johnson is covering the same event and doing his usual superhuman thing:  Link.

Thoughts on Dr. Lapp's Top 11 Supplements

This article listing Dr. Lapps's top 11 ME/CFS/FM supplements made the blog rounds about a month ago.  Since then, it's been stuck in the back of my mind because I've been thinking about doing a blog post that summarizes my personal philosophy on supplements: how many to take; how much is too much; how do you know if they're really working.  Basically at blog post that summarizes this entire blog.

There seems to be a split among patients. Some think that most/all supplements are an expensive waste of time or they can't tolerate them, and others find they lead to small improvements in symptoms, which they deem to be worth the trouble and expense.  While I understand both sides, I am in the latter group.

I take the first 6 supplements on Dr. Lapp's list (Multi-vitamin, B12, D3, Calcium, Magnesium & D-Ribose), plus 9 and 11 (DHEA & Fish Oil).  At one time or another I have been on all of these supplements, except # 10, Lysine, which is only indicated for herpetic mouth sores.

I need to spend more time gathering and organizing my thoughts on this for a future blog post, but the gist of my thinking is this: It may be very difficult to notice improvements based on any one of these supplements alone.  The differences are very subtle.  But collectively, I think they do improve quality of life for patients and I think they help put a dam in the middle of the "cascade of symptoms" that often drags patients further and further down as the years go on.

More on this in a future post...

Why It's a Good Idea to Keep a Daily Health Log

About a year ago, I blogged about my daily health chart.  The short version: I use a Google Docs spreadsheet with my own custom categories (example).  Since then, I've often questioned whether it is worth the effort.  Remembering to log in daily and input data into a dozen fields is not easy.  I often lose my motivation and find myself playing catch up after a four or five day lapse.

Then I'm reminded why I do it.

For about 80% of my crashes, the cause is easy to determine.  Often my family is sick and I have the same symptoms.  Or I pushed too hard the day prior and I'm paying the price with PEM. 

It's those other 20% of crashes where the chart really helps.     

Starting yesterday, I hit an unexplained crash.  There were no symptoms of a cold or other infection. I hadn't exerted myself the day prior.  The only clues I had were the two main symptoms of this crash (every crash is a little different).  This crash had a particular type of severe brain fog (I can distinguish among types of brain fog) and actual leg pain, not just numbness, which is rare for me.  I knew this combination was familiar, but I couldn't remember what triggered it before.

I used the search function on the health chart to pull up other instances.  I discovered these symptoms happened twice before, although not since 2012.  In both prior instances, I had been experimenting with "Fredd's" methylation protocol, which calls for very high doses of active forms of vitamin B12.  A side of effect of this, as I learned at the time, is over-methylation which robs the body of potassium.  In both prior instances, I increased my potassium dosage and the crash dissipated.  I then remembered that I stopped taking potassium supplements about two weeks ago, thinking that perhaps I didn't need them anymore since I'm now taking a much lower dose of vitamin B12.

Following this hunch, I immediately went out and bought potassium tablets.  I took about 400mg in the parking lot of the supplement store.  It's now about 5 hours later and the brain fog is slowly lifting, while the leg pain eases away.  So it seems that even though I'm no longer taking high doses of B12, I still need to supplement potassium.

I think I'll keep charting....

[Update 3/24/14:  A week later I was proven right.  I received the results of a Urine Essential Elements test that I submitted to Dr. Yasko.  Basically, "low potassium" was written all over it.]

My cold buster formula

A funny thing happened between last winter and this summer - I became much better at fighting colds.  Last Fall and Winter (and much of Spring), just like the previous one, saw me wiped out by an almost unbroken chain of colds -- i.e. "sick on sick" for 6 months.  With two pre-school aged kids at home, it's almost impossible to avoid.  We all trade one cold for another throughout the cold weather months.  Just as one bug has worked its way through the family, another one starts making its rounds.

During past cold reasons, as the family's only immuno-compromised person, I was always the hardest hit, and it usually stayed with me twice as long as every other family member.  A particular virus might give my wife a few sniffles and coughs for 4 or 5 days and be gone, while I battled 6 or 7 nasty symptoms for two full weeks.

Now this season--for whatever reason--I seem to be recovering just as fast and in some cases faster than my other family members.  As a result, my monthly health chart averages are substantially higher than equivalent months from past years.

There's no way to know with certainty what caused this change.  Many of us in the ME/CFS community recognize that there seems to be a split between those with overactive immune systems, who never get colds/flus, and those with under active immune systems, who constantly get "sick on sick."  Many of us changed from one to the other at some point - often around the 3 year mark, which is where I am.

So that's a possibility.

But I feel strongly that this change has something to do with a cold-buster supplement regimen that I've been using this season, consisting of four immune boosting supplements:

1)  Liposomal Vitamin C in liquid form - 4,000 mg per day, spaced in 1,000 mg doses 4x/day (pulsed for 3 or 4 days on, 3 or 4 days off)
2)  Thymic Protein A - 3 packets a day, evenly spaced
3)  Zinc with Echinacea lozenges, 3 or 4 per day, evenly spaced
4)  Super Good Stuff nasal spray, 2x/day

I've experimented with some combination of these supplements for a couple of years now, but it wasn't until I started attacking colds with all four of them that I really started to see a big difference.

The nasal spray is something I'd heard about from another patient about a year ago - she swore by it.  I was highly skeptical, but it does really seem to blast sinus infections and even helps with non-sinus issues.  Check out the ingredients and you'll see a combination of a number of cold-busting ingredients that you've likely read about many times.

If a sore throat is part of the cold, I'll also use this Chinese medicine called Pei Pa Koa.  I believe it only provides symptom relief, but it does seem to help quite a bit.

If anyone else has tried a combination of any of these treatments, I'd love to hear how they worked for you.

Don't miss Christine's account of improvement through treatment with Dr. Chia

A good friend of mine, Christine McLaughlin, continued her series of articles on Health Rising documenting her treatments with Dr. Chia.  This latest article is one of the most encouraging yet and it lends further credence to Dr. Chia's theories and methods.  It's a must-read...  Click here to be taken to Health Rising