edema

Sometimes, I feel like this:


Doesn't everybody?

anthem

If any locals are interested, I'll be singing the Star Spangled Banner (with three good friends, in a quartet arrangement) for the little league All-Stars game this Saturday night. At least, I think it's for a little league All-Stars game. I'm supposed to show up at my friend's house at a certain time is all I know for sure!

edited to add: It was the West End Little League All-Stars vs. Amelia at Henderson Field, both the 9 and 10 year olds. And we sang purty!

billionaires

Money magazine has a delightful article this month: How to Marry a Billionaire. Several charming anecdotes about rich men marrying waitresses (and a few about rich women too). There was practical advice about the types of activities that are worth investing in (such as becoming a member of a museum, attending gallery openings, etc.), and they make it sound so simple. All you have to do is:

1. hang out where billionaires hang out
2. dress well
3. educate yourself about their interests
4. try to get a job working for one

I needed a magazine to tell me this?

nerd test redux

I had to re-take the Nerd Test because I remembered that I did in fact build my current computer.

another year older

As I begin my 39th year, it seems appropriate to ruminate a bit on the passage of time.

The most significant thing I've noticed about growing older is that time speeds up. A week just isn't as long as it used to be. It's simply a matter of proportion: when you're ten years old, a year is a tenth of your life; when you're 40, a year is 1/40 of your life, and it takes four years to make one tenth. At ten, three months is 1/40. Sounds about right.

My 20-year high school reunion is this summer, and I don't have a lot to show for those 20 years, just two university degrees. I don't have a career, or a family, or even a social life. That was all supposed to happen during the past decade, but I've had an illness instead.

They say life begins at 40. I think that the Marshall Protocol makes that a very real possibility for me. I'm hoping to start in early July, and that means that on my 40th birthday, I'll have been following the MP for nearly two years. By that time, I should be feeling better, and able to work and travel. My CFS will be well on its way to permanent remission.

But of all the symptoms I am looking forward to losing, the most exciting for me is brain fog. I would love to have a fully functional brain again.

Films this week

I do not normally watch lots of movies. This past week, however, has been an exception. In the last few days, I have watched:

• Ella Enchanted


• Pirates of the Caribbean: Dead Man's Chest


• Shrek the Third


• What the Bleep Do We Know?


• Eddie Murphy: Raw


• The Secret


• The Brothers Grimm

This may have something to do with the fact that my brother, who is a movie nut, was here visiting this weekend.

CWD bacteria

Cell Wall Deficient Forms: Stealth Pathogens, Third Edition is a book by Lida Mattman explaining the basics of the tiny pathogens that Dr. Marshall believes cause Th1 diseases, including chronic fatigue. The Marshall Protocol was designed to kill them. Dr. Mattman was nominated for a Nobel Prize in 1997 for her work in microbiology.

My favorite quotation from the linked page: "If bacteria were politicians, they would belong to the conservative party."

Vitamin D

Here's a long-promised post about Vitamin D.

On the Marshall Protocol, I will have to avoid all sources of Vitamin D, including D-rich foods and sunlight.  The latter will be a challenge in Southeast Texas, and the former isn't easy thanks to industry-wide fortification of dairy foods.

Vitamin D is one of the most widely misunderstood vitamins out there.  First of all, it's not really a vitamin.  It's called a vitamin because when it was first identified in the 1920s, it was thought to be an essential nutrient. In fact, it is not an essential nutrient because the ingested form is really a precursor—or prohormone—to a hormone that can only be created by the body, not ingested. 

The term "Vitamin D" actually refers to several substances, including the one found in fortified foods (D3), the hormonal precursor, called 25-D, and the hormone, which is called 1,25-dihydroxyvitamin D3, or 1,25-D. The hormone is involved in the immune system, but its exact role there and elsewhere is the subject of much debate. Many long-held beliefs about Vitamin D, such as that a deficiency of it leads to Rickets, have been disproved. (That study, from March 2007, confirmed this 2004 study.) A search on PubMed reveals that there is a lot of current research into Vitamin D's functions. Some of it is contradictory, indicating that it is not well understood yet.

What is certain is this: in healthy people, 1,25-D is synthesized by the skin in the presence of sunlight. Just 10 minutes exposure to indirect sunlight once or twice a week is all that is needed by most people, but more sun exposure doesn't lead to too much 1,25-D in healthy people, because the body creates only as much as it needs. Even this is misunderstood, though: the prevailing theory is that direct contact of UVB is needed on the skin to produce 1,25-D. But this is contradicted by the fact that nocturnal mammals, and even some species of fish that live in caves, produce plenty of 1,25-D. In other words, sunlight exposure is not the only mechanism for the body to produce 1,25-D, and is not absolutely necessary.

edited to add: I left out a step. D3, which is ingested, converts to 25-D in the presence of sunlight and also in the liver. 25-D is then converted to the hormone 1,25-D in the skin and in the kidneys.

And that doesn't even begin to address the issue of how much is necessary for health. What's more, the only function of the precursor Vitamin D (i.e., what is found in foods and supplements) is to enable the body to produce 1,25-D. Since, in healthy people, the body does not produce excess 1,25-D no matter how much D3 is ingested, supplementation is usually both harmless and unnecessary.

The rub, of course, is Vitamin D regulation in sick people, not healthy ones.

There are some studies showing that 1,25-D acts as an immunosuppressant. This is why it can make people with immune-related diseases feel better temporarily: feeling bad is a result of the immune system trying to cope with the disease. Shut that function down, and you don't feel bad anymore. But the disease doesn't go away. It's just like taking steroids.

Dr. Marshall believes that all people with Th1 diseases also have a Vitamin D "disregulation." In these people, the body produces too much 1,25-D. A serum D3 test is therefore not a reliable indicator of 1,25-D levels, but 1,25-D tests are rarely performed because they require specialized handling and are only performed in a few labs (two or three in the U.S.). Another reason they are not performed is that all this 1,25-D research is new and so doctors don't know about it—and if they did know about it, they wouldn't know what to do to treat it.

In any event, Dr. Marshall believes that 1,25-D is what enables the cell-wall-decificent bacteria (which he says causes Th1 diseases) to slip into the white blood cells. So reducing the levels of 1,25-D makes it harder for the CWD bacteria to hide, and enables the immune system to start eliminating them. The only way to reduce the level of 1,25-D is to reduce or eliminate ingestion of D3 and avoid sunlight. In time (many months for some people), this lowers the 1,25-D to a point where it both prevents the CWD bacteria from moving in and out of the phagocytes, but also enables the immune system to recognize the CWD bacteria.

Please, Doc

I finally got my printouts about the Marshall Protocol put together in a binder, and took it to my doctor. The binder was two inches thick, and there were more than 20 items in it (I happened to have some numbered tabs on hand so I used them). No, I don't expect him to read it all. I just wanted him to have it available if he was interested. Instead, I described the MP very succinctly in my cover letter, and then on a separate sheet provided him with a list of exactly what I need from him (prescriptions, blood tests, etc.). I'll make an appointment for a couple of weeks from now to give him time to review it. I tried to make it easy for him to say Yes.

edited to add: I have an appointment on July 2nd to consult with my doctor about the MP.

How nerdy are you?

fever

The last few posts are a sort of microcosm of my life.

A low-grade fever comes and goes, I stay home because I feel bad and then it's gone so I go out and try to do the things I need to do that I've been putting off, and then the fever comes back, and I end up unable to leave the house and having trouble finding anything cheerful to post about.

On Wednesday, I stayed home from choir practice for the second week in a row due to fever (two degrees). In spite of my optimistic assessment the week before, I'd been unable to go.

Then yesterday I had to go out and do some errands that couldn't be put off.

All along I've been trying to come up with something positive to say on my blog, but all I could come up with was a list of all the things I haven't gotten done by June 1st. Some of them are kind of important, like paying my bar dues and doing some CLE. But don't worry, I'm not posting the list here.

Overall, this is what living with CFS is like. Every day I'm optimistic that I'll feel better today, tomorrow, or next week. Maybe today, or tomorrow, I'll even feel good enough to go out and do things, both fun things and need-to-do things. And maybe by next month I'll feel well enough to start working again. But the reality is that I'm pretty much unable to do squat, even post on a dadgum blog.