Monday, December 31, 2007

New Year's Eve

I'm hanging in here today.

Symptoms: headache, joint pain, muscle pain, brain fog. Took pain pill.

I am working on MP-related stuff today, lots of reading. Also measuring for curtains, trying to brainstorm about possible lighting solutions for the kitchen, dining, and living rooms.

Yesterday I brought home and installed a new plasma HDTV. Our old TV had a label on the back that read: "Manufactured in March 1985." It involved some furniture moving, some of which isn't really done yet. I turned it on and ran the intial programming setup and it found some HDTV channels that I didn't even know we had-- I think it's just the broadcast network HD version and a couple of other channels like TNT and ESPN, but there are one or two that don't seem to correlate to anything else, and one of them, called "HD Theater" was absolutely astonishing to watch. I think it will be a while before the "new toy"ness wears off of the new TV.

Saturday, December 29, 2007

Gearing up for the MP

I never got around to posting about it, but I did find a doctor who's willing to prescribe the MP for me! He's located very near my house and it's really easy to get in to see him-- couldn't be better! I actually have the prescriptions in my hand and will be starting as soon as I've completed this checklist:

  • Receive light meter (ordered on eBay). Analyze various rooms and determine where I will need to put blackout curtains. Buy and/or make curtains. Get hardware and put them up.
  • Locate 20-watt and/or amber lightbulbs and replace all appropriate bulbs. Determine alternative lighting/window coverings for public rooms.
  • Order special sunglasses. The company is closed until January 2nd! Can't start until I have them. Should have ordered them at the beginning of December as I've been wishing for them already.
  • Hats, gloves, scarves, bootcut jeans. Burka?
  • Analyze foods for dietary restrictions; find new products/sources for new needs.
  • Get bloodwork results back and report to MP website.
  • Get disabled tags for vehicles (my dad qualifies for one too and I tried to do this already but the bureaucrats, God bless them, needed more paperwork).
  • Finish weaning myself off of some of my current prescriptions.
  • Get MP prescriptions filled.

With any luck I'll be able to start in mid-January! I am really looking forward to it.

Catching up

I've let this blog sit and collect dust this fall, but I haven't forgotten it. It's just been a difficult few months; I've had several singing commitments that required significant rehearsal times, and then my dad was in the hospital for a month (3 weeks, 1 week home, 1 more week in) starting the day before Thanksgiving. He's much better now and I won't give a detailed report here, partly because it was very complicated, but he's turned the corner.

My job while he was in the hospital (and my mom was there 16 hours/day in Beaumont and 24/7 the two weeks he was in Houston) was to keep up with the house and bills and take care of myself and our pets (and go to rehearsals and performances). I didn't do any of them very well but I got through them all. Here is a ten-day sample of what happened in our house this month:

  • Dec 14th & 15th: Dad's been home two days, very weak. Home health (they came every day). Two very long rehearsals for me for Messiah. My 17-year-old cat had a seizure.
  • Sunday, 16th: Sing at church in the morning, Messiah performance in the afternoon. Dad's siblings drove over from Houston.
  • Monday, 17th: Put my cat to sleep and buried her in the back yard. I'd had her 15 years, since my first semester in law school. Cleaning ladies came to clean the house. I went shopping (not for Christmas, for my mom).
  • Tuesday, 18th: Dad still feeling so bad he goes to the cardiologist and they admit him to St. E.
  • Wednesday, 19th: Dad in St. E. I had a long church choir rehearsal in the evening for our Christmas concert. My mom, who usually goes to bed at 8pm, went Christmas shopping and didn't get home until 10:30p.m.
  • Thursday, 20th: Dad in St. E. He got a pacemaker in the afternoon, anticipated but very suddenly scheduled. My church choir concert in the evening. I had a big solo so I couldn't really skip any of this. My dad made my mom leave him and come to my concert! (He was feeling better already.)
  • Friday, 21st: Dad in St. E. Mom and I both got to go to Christmas parties in the evening.
  • Saturday, 22nd: Dad in St. E. My brother arrived for the holidays. My mom went to Walmart AGAIN.
  • Sunday, 23nd: I sang at church in the morning. Dad came home from the hospital.

Next post: Gearing up for the MP.

Friday, September 14, 2007

New blog about the MP

Amy Proal, a scientist and MP patient, has a new blog, Bacteriality. So far, blog includes interviews with scientists involved in researching L-form bacteria and explanations of Th1 diseases and of the Marshall Protocol.

I highly recommend this blog to anyone looking for info about the Marshall Protocol who has found the study site confusing. Amy has a gift for lucidly explaining the science to the uninitiated (and the initiated too). Talking to Amy was the scale-tipping event that made me decide I must pursue the Marshall Protocol.

I haven't even read the entire blog yet. There's a lot there. But I'm going to read a little every day until I catch up. Way to go, Amy!!

Happy Friday

We were grateful this morning to have no more cleanup from Humberto than picking up some tree limbs. Some of them were rather large, but the only damage was an old terra cotta flowerpot on the deck that was shattered.

Things got a little more interesting when the power went out at 1pm. We were not reassured by the recording at Entergy that said that power should be restored for most people by tomorrow. (According to the Enterprise website, by 1pm they had restored about 60%.) Fortunately our power came back on about an hour later. So many things to be grateful for!

I am still feeling pretty good after my cleanse, and managing to eat right, which allows me to avoid low blood sugar, weight gain, and alimentary distress (as Amelia Peabody would say).

Thursday, September 13, 2007

Humberto via satellite

And here is an animated gif of the satellite/radar image of Humberto moving over the area this morning:

Well, if you want to see the animation, you'll have to go here.

What? We had a hurricane?

When I went to bed last night, there was a tropical storm out there in the Gulf about to move ashore somewhere nearby. But I didn't even know that-- last I'd heard, it was only a tropical depression. It wasn't even raining hard in Beaumont yesterday, just sprinkling, barely enough to clean my windshield of lovebugs. In fact, I think, as I drove through the swamp yesterday (aka 105 through Bevil Oaks), that the lovebugs were winning over the raindrops.

Anyhow, when the phone rang for the fourth time this morning from enquiries to see if we had survived the storm, my cat moaned and covered his eyes with his paw, but I gave up and got out of bed. I was trying to sleep in from being out late (for me) last night at choir practice after a completely exhausting day--make that week so far--but it was not to be. Not that I expect any sympathy from those who have to go out into the world every day, but--well, I can't think of a positive way to state it, so I won't.

The short version: for us out in Pinewood, the storm hardly registered. We got the outer bands sometime between 3 and 4am and all we lost were dead tree limbs from Rita that hadn't come down yet (and needed to). We only got 2.2 inches of rain and the drainage ditch isn't even half full. That is a great relief to those who live in the lower parts of Pinewood and Bevil Oaks.

It was a very compact storm, with high winds only covering about a 15-mile radius. It came in very close to where Rita went ashore, and passed right over Beaumont and areas south and northeast of Beaumont before moving into Louisiana. There has been some flooding in Beaumont, Nederland, and Vidor. Local news story here and image gallery here. About 100,000 people lost power.

MC day 11

I decided to end my fast today. I remembered another event (the Symphony) this weekend and I want to be able to enjoy going out to eat before the concert, plus my three other events next week. So my third Master Cleanse was only ten days, but that's nothing to sneeze at. I do feel better, and am very glad I did it.

However, feeling better often leads to me doing too much--you'd think I'd have learned by now--and so I am very, very tired. I hope two days will be enough to rest before the merry-go-round starts next week, not that I've been resting this morning.

Wednesday, September 12, 2007

MC day 10

Day 10 on the Master Cleanse, and trying to decide how far I want to go.

There are no fewer than three food-related events I'd like to attend next week, and I can only decline two of them. The one I can't avoid is a family birthday party on Sunday. It is tempting just to stop with a traditional 10-day cleanse, but another part of me feels that if I've taken this much trouble already, I ought to go forward in order to reap further benefits.

Maybe I'll flip a coin.

I'm a bit tired and grumpy today. I had several unexpected physical chores yesterday after two other big days, and everyone else in the house was tired and doing chores too. Today I have choir practice and had planned to do some errands and go to Curves. We'll see how much of it I get done.

Tuesday, September 11, 2007

MC day 9

For the first time on a cleanse, I've started feeling an energy boost. Well, sort of. Usually I feel good after the cleanse, but a lot of people report having lots of energy during the cleanse, as soon as the first few days are finished. I've never had any energy during the cleanse, though I do feel better. Yesterday afternoon, I went to town to run several errands. When I was done, I was in the vicinity of Curves, so I went in for a short workout.

This is significant for several reasons. One, I haven't been to Curves at all since about April. It's just been a rough summer. It's been so rough that I haven't left the house much at all and when I do go to town to run errands, I have to rest for days afterwards. So the fact that I both wanted to go to Curves and was able to go after a few hours of running errands is unheard of.

Also, my caffeine addiction is gone. I went without coffee and had tea instead this past weekend. It was hard the first day, because I really craved it--I hadn't realized how much I crave it--but the amazing thing is that the third day, the craving completely went away and I didn't even bother to have any tea. And I didn't have a headache! Nary a twinge! Usually if I miss my morning caffeine dose, I have a severe headache by 3pm. And on my first cleanse, when I quit coffee cold turkey, I had headaches.

Maybe getting decaffeinated and the energy boost are connected. Perhaps I'll try staying off coffee, at least for a while, after this cleanse is over. Then again, perhaps not.

In other departments, my joint pain is gone, my skin has cleared up, old scars are fading, and my edema is mostly gone. I'm starting to look forward to preparing and eating the right kinds of foods after the cleanse.

Monday, September 10, 2007

MC day 8

Here I am on the 8th day of my detox cleanse. A "normal" MC is ten days. Last time I went 19 (plus four days to get back onto solid food). This time I plan to just listen to what my body says and go on as long as I'm feeling good about it.

One thing I've done differently this time around is that I've had fewer servings of lemonade, and I've been making it less sweet. Lately I've been having to force myself to drink the recommended number each day. I am drinking lots of water. I have not had a low blood sugar episode yet on this cleanse.

Had a big day yesterday. After singing at church in the morning (including a small solo), my church choir sang for a special mass yesterday afternoon at the Cathedral-Basilica for couples celebrating their 25th wedding anniversaries this year. We did the same music as we'd sung in the morning, and it went really well. That church is such a joy to sing in! It was a nice anticipation for us of our concert next month.

Afterwards, most of the group went to Rio Rita's for dinner. Normally I would have been all over that like a duck on a junebug, but I really didn't think I needed to watch my friends drinking and eating Mexican food while I drank water.

Friday, September 7, 2007

MC day 5

Today is a good day MC-wise, but I am grumpy. It is probably a detox sypmtom, but I am wallowing in it. I know I'll feel better this evening.

I have not had enough energy to go to town to do errands. My low-grade fever is back.

I spent some time this morning catching up over at the MP study site forum. My brain is on information overload, but I was a bit disappointed to see that there really isn't any new news since I last logged in a month or two ago. In fact, they haven't posted anything new in the News forum since November. Last time I requested a news update (they have an important orphan drug application at the FDA, as well as other ongoing FDA-related activities) I got my nose bitten off. In fact, it seems like every time I've posted there, whether a question or even a joke, I've gotten my nose bitten off. Having pretty thick skin, I haven't lost any sleep over it, but it hasn't exactly encouraged me to hang around and offer moral support to other patients. Oh, well, I'll go back when I get started myself on the MP.

I was supposed to get new patient forms in the mail this week from a doctor that I hope will try the MP with me, but guess what, it didn't get here. One of my planned errands is to go by his office and fill out the paperwork so that I can get an appointment scheduled. But I'm too tired to do errands. It's frustrating.

But maybe that's just because I'm grumpy today. C'est la vie.

Thursday, September 6, 2007

concert date

Oops, I put the wrong date in the previous post for the concert. It is October 7th, not October 6th. It was originally October 6th but it got changed, for which I am thankful because I would not have been able to go on the 6th; my cousin is getting married that evening. So make it

7 October 2007
St. Anthony Cathedral-Basilica
Beaumont, Texas

St. Jude Thaddeus Chorale

We will present an all-Latin program, and I have two solos. More later.

MC Day 4

Today has been a good day, MC-wise. I have pretty much forgotten about food, forgotten I'm fasting, even. Making progress.

Otherwise, it's been a tough day. I have been doing some chores, but ordinarily I would hardly be able to do them at all, so it counts as a good thing.

Choir practice went well last night. Put October 7th (6:30p.m.) on your calendar for our concert at St. Anthony Cathedral-Basilica! I am singing some solos and the choir is sounding terrific!

Wednesday, September 5, 2007

MC day 3

Today is Day 3 of my detox fast. It's called the Master Cleanse, and there is more info here. A few answers to FAQs I've had in the past about the MC:

The keys are fresh lemon and/or lime juice, Grade B (i.e., dark) maple syrup, good cayenne pepper (I get it in bulk), good sea salt, and good senna tea. I buy everything but the fruit organic at my local health food store, Basic Foods. In previous cleanses I've used organic fruit too and spring water, but I'm going with cheap fruit and Brita water this time.

I do a few things slightly differently from the purists: I allow myself coffee (gasp!) for the first few days, and plenty of herbal tea whenever I want it (instead of restricting to once a day), and I don't start on the "lemonade" until late afternoon. I have found that with my hypoglycemia and my anti-breakfast gene I don't want anything until lunch at the earliest. So I don't drink any lemonade in the morning.

No, I didn't buy the book advertised on the site; I bought the original book, which is still in print (and available at Basic Foods). I think however that Glickman's site is the best one about the Master Cleanse on the net, and I love the forum there. It was a significant part of my success in my first two cleanses.

I highly recommend the cleanse as an inexpensive and very effective alternative to a lot of detox products out there. But it ain't for sissies!

Anyway, Day 3 has been a pretty good day. I've had fair mental focus and haven't been hungry at all. I am still running the low-grade fever I've had off and on for weeks, and some sinus drainage, but that's pretty normal for me. I'm having a bit more edema than I like but that will go away eventually.

Tonight I have choir practice, and before that some errands to run. Gotta get moving!

Banana guards

I swiped this link from Susan:

Tuesday, September 4, 2007

Long time no post

It's been a while, so hello to all my blogger friends, and sorry for neglecting you. I hope y'all're all (as we say around here) well.

I have not been very well. I have not yet found a Marshall Protocol doctor, which is mostly my own fault for not trying harder. In answer to a question from an anonymous reader: no, I haven't implemented any pre-MP changes. They do not really recommend it on the website, the reasoning being that before you start doing things like reducing your Vitamin D levels (both diet and sunlight), you should have the "Benicar blockade" in place, because its entire purpose is to protect you from the effects of activating your immune system.

I have, however, made several lists and plans for what to do as soon as I have the written prescriptions in my hot little hand. Order the special sunglasses, buy blockout curtain liners and hardware, make curtains, buy gloves and hats.

Right now I am doing the only thing that's made me feel better in the past two years since my last relapse: a detox fast called the Master Cleanse. I'll spare you the gory details (which are not pretty) and just say that yes, by "fasting" I mean no solid food and no, it's not unhealthy or crazy. A standard Master Cleanse is ten days and I am currently on Day 2. I may go shorter or longer than ten days, but I will definitely do at least 5. Last time I did about 21 days if I recall correctly.

Answer to Anonymous's second question: I have law school certificates for international law and intellectual property law, but I don't hold any board certifications. These days I am a generalist, but I'm not really practicing right now except for helping friends and family. For example, I recently did a will, now I'm doing a trust, and I've written leases and provided advice regarding landlord and tenant law as well as divorce law. I make no pretensions that my advice was worth much more than my various relatives paid for it, but I have taken CLE courses in estate planning and "family" law.

Wednesday, August 1, 2007

He said "no."

Last Thursday, my doctor said he was not willing to assist me to follow the Marshall Protocol. He said it was because the protocol is experimental, and because there's "no proof" that it works.

Well, I'm disappointed, but I won't dwell on it. I have some other leads. Worst case scenario is that I have to go to a doctor in Houston, but I think I can find a doctor in the Beaumont area.

I'll post more later about why I've neglected my blog over the last month, and to address some specific questions from my faithful readers.

Thursday, July 5, 2007

He didn't say "no!"

I saw my doctor on Monday to discuss the Marshall Protocol. The good news is: he didn't say no!

The bad news is—no, I'm not going to focus on "bad." I'm not even going to characterize the passage of time as "bad." So what if it's another month before I can start the MP? Time is one thing I have plenty of.

Anyway, my doctor said that if he finds nothing harmful about the protocol, he is willing to let me try it. At least, that's how I interpret his remarks. The important thing is that he didn't dismiss it, and he seems to understand where I'm coming from.

Monday, June 25, 2007


Sometimes, I feel like this:

Doesn't everybody?

Friday, June 22, 2007


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!

Thursday, June 21, 2007


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?

Monday, June 18, 2007

nerd test redux

I am nerdier than 93% of all people. Are you a nerd? Click here to find out!

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.

Tuesday, June 12, 2007

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:

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

Monday, June 11, 2007

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."

Thursday, June 7, 2007

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.

Friday, June 1, 2007

How nerdy are you?

I am nerdier than 89% of all people. Are you a nerd? Click here to find out! says I'm 4% Stupid! How stupid are you? Click Here! User Test: The Trekkie Test.


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.

Saturday, May 26, 2007

wiped out

I completely wore myself out yesterday shopping. I went to the fabric store to look at blackout drapery liners, patterns, and fabrics for curtains and a few wardrobe possibilities for the MP. I spent a couple of hours in the store, had a panic attack when I thought I had lost my purse, and then didn't buy anything.

Oh, but I did manage to spend $45: I bought gas and lunch.

So today I'm watching Star Trek recordings and wishing I hadn't eaten popcorn for lunch.

Thursday, May 24, 2007

a good day

Feeling much better today, no fever or sinus trouble, just the normal joint and muscular pain that never really goes away without drugs.

This evening I am trying to finish putting together a three-ring binder of printouts and articles about the MP to take to my doctor tomorrow. I'll make an appointment to see him in a couple of weeks to give him time to review it first.

I have been amusing myself looking at hats, scarves, and gloves on eBay, for my probable MP enrollment. Although the burqa ensemble is tempting, and so is the hajib, I think I will be able to get by with a large scarf or two. I will probably make one. The balaclavas are also tempting. I think that an abundant scarf, along with the very dark sunglasses, and possibly a wide-brimmed hat and kid gloves, will be fun, even elegant. I can do an Audrey Hepburn impersonation or something. Hmm, I wonder if I can get one of those long cigarette holders on eBay?

Wednesday, May 23, 2007


Better today, which is good because I have choir practice tonight.

Last week I lost an opal out of one of my rings. I was very annoyed, because I bought the ring from Australia, and although it isn't terribly valuable, I like it very much and don't see how I could get a stone matched to replace it. (There are three other identical opals in the ring.) Today I took everything out of my purse, and found the missing stone in the bottom of it. So now all I have to do is fix it!

Tuesday, May 22, 2007


Today I am running a fever and completely paranoid about catching a bug from my niece's future stepson, who was here (along with my niece and her fiance) for a visit yesterday. We had a nice quiet day watching Disney movies (note to self: must replace dozen-year-old VHS tapes with DVDs), and my dad smoked chicken and brisket, both of which were excellent (along with my mom's homemade cole slaw, potato salad, and apple pie-- yum), and taking walks around the backyard with our two dogs and my niece's two dogs. But the baby was sick, and got sicker as the day progressed. I've felt so blah today that I haven't been able to even think about doing something requiring a brain, like tackle the criticisms of the MP, as I promised earlier.

Sorry for the whiny post. Actually it took me all day to realize I have a fever, because I have one so often. So no pity, please! It's actually pretty normal.

I will try to post something more cheerful soon!

Sunday, May 20, 2007

Living with CFS

I can pinpoint when I got sick almost to the day.

It was in September 1997. I had had a very hard year. My father had almost died on the operating table in May, and I had come home to help take care of him for three months. When I went back to Chicago, I had no job, was in debt, and had been abandoned by my boyfriend for someone else. I spent a very difficult couple of months, working temp jobs (not even as an attorney), depressed and barely making ends meet. Suddenly, at the beginning of September, I got a call from the owner of a large software company I had worked for the year before. He wanted me to come back. I dictated my terms. It was a wonderful opportunity.

About three weeks later, I caught whatever was going around the office. It wasn't all that unusual, but I was so tired I could barely get out of bed. I didn't mess around. I went straight to a chronic fatigue specialist I'd heard about on the radio. He ran a large battery of tests, diagnosed me with chronic fatigue, prescribed low-dose cortef, thyroid, and a couple of other drugs, and massive amounts of supplements. Basically, my immune system had depressed to the point where an otherwise non-problematic bug overwhelmed it, and every virus I'd ever had reactivated. I tested positive for everything from mono (Epstein-Barr) to shingles, all at the same time.

After three months, I was only managing to work for two or three days a week, and my parents told me to take a leave of absence and come home for three months.

Nearly ten years later, I'm still here.

I have been to every specialist my GP can think of. I have received additional diagnoses, been taken off of some drugs and put on others, been told by specialist after specialist: "I can't find anything wrong with you," followed by suggestions to take antidepressants. I have been tested for rheumatoid arthritis, lupus, lyme, sleep disorders, endocrine disorders, thyroid cancer, cardiac problems, lung problems, circulation problems, and probably half a dozen things I can't remember right now. I have been to immunologists, allergists, rheumatologists, endocrinologists, naturopaths, chiropractors, accupuncturists, massage therapists, and energy healers. I have tried literally dozens of miracle supplements.

In March 2004 I felt well enough to work part-time. But eventually, I worked too many hours, and once again fell into the cycle of catching whatever went around the office. In early 2005, I couldn't get better. I took 15 rounds of antibiotics over the course of about six months. Once again, I took a "leave of absence" and haven't gone back since.

In addition to fatigue, general malaise, and susceptibility to catching the bug du jour (with very slow recovery), I also suffer from chronic joint pain, some muscle pain, exercise intolerance, low body temperature, cold feet and ankles, low grade fevers, heat and cold intolerance, weight gain, hypoglycemia, hyperlipidemia, hormonal imbalances, brain fog, memory loss, irritability, travel intolerance, post-exertional malaise, thirst, salt cravings, migraines, photosensitivity, dry eyes, TMJ, sensation of chest pressure, shallow breathing--think I'll stop there.  edited to add:  enlarged lymph nodes, which "popped out" very painfully under my arms.

Some of these symptoms may not seem like "real" CFS symptoms. I know that everyone complains about memory loss, for example. I list them all both because I'm trying to be thorough and because in reading about the progress of CFS patients on the MP I have recognized a lot of symptoms that they say are improving that I did not previously recognize as symptoms.

Also, there are several specific symptoms (such as joint pain) that I've had for years that no doctor has been able to explain, which I've recently discovered (from a modicum of internet research) are apparently now-accepted CFS symptoms. They weren't when I was diagnosed.

This is a truly debilitating illness which has entirely changed my life, and the lives of those around me. It's quite likely, for example, that I will never be able to have a family. I will certainly never have a real "career" as an attorney (or a singer!), and will probably remain financially dependent on others, unless I am cured. I have, with no exaggeration or self-pity, lost the best years of my life to this illness. People who knew me before I got sick remember a very different person from the one I am today. I used to be high-energy, always on the ball, seizing life with both hands.

People with CFS on the MP for a year or more say that they have been given their lives back. They feel decades younger. So the MP is very tempting. No one else has claimed to be able to cure chronic fatigue. And I want my life back.

Saturday, May 19, 2007

MP criticisms

Critics of the Marshall Protocol tend to attack it on four bases--

1. Vitamin D
2. double-blind studies
3. esoteric scientific theories about why it can't work
4. ad hominem attacks against Dr. Marshall

--according to what I have found online so far. I will try to address these criticisms one by one in the coming days. I am working this out for myself so there's no telling where this will take me.

I do find it interesting though that I haven't found any criticisms of the drug protocol itself, even though the usage of several of them is "off-label." There is just the general suggestion that taking antibiotics long-term (for two years or so) must be inherently bad.

Friday, May 18, 2007


I went to a CLE this morning, on the subject of Family Law.  
Why do we call it  "family law" when it destroys families?
Shouldn't we call it "anti-family law"— or, here's a novel
idea: "Divorce Law."

(I don't practice divorce law, but I have to get in a certain number of CLE hours, and this is what they were offering this month.)

Recognized quite a few people there, made some new friends, and noticed a preponderence of western boots with suits.  I pulled my boots out of the closet when I got home and dusted them off.

Thursday, May 17, 2007


My friend Rob has too much time on his hands.

crummy old shoes

I have a pair of crummy old slip-on shoes that I keep by the back door, so that I don't get splinters in my feet from the deck or step on a pinecone or something less fun.

Earlier this week, I went far out back with the dogs, wearing my comfy crummy old open-back shoes. I was admiring a blooming oleander by the back fence when I noticed ants. On my feet. Ouch.

This is not all that unusual an occurrence, and what I normally do is leave the shoes outside for a few hours until the ants have lost interest and vacated the shoes. So that's what I did. A few hours later, I checked them, but there were still ants on them, so I left them. Late that night, I went out to get them, and noticed a puddle on and around one shoe. That's right. One of the dogs had peed on it. I guess I left it too close to a plant or something. At any rate, it was 11pm and so I left them there, planning to deal with it on the morrow.

Next morning, I went out to get them, intending to throw them into the washer, and the OTHER shoe had a pile of dog poo on, around, and IN it.

Who knew a dog could aim so well with his poop?

There they sit still.

Wednesday, May 16, 2007


My word for the day is ambivalence.

I just realized that my posts so far are rather negative. I've also been having some difficulty playing nice in responding to the answers to my questions over at the MP bbs.

So I want to make it clear that despite my frustrations and skepticism, I am actually optimistic about going on the Marshall Protocol and regaining my health.

I still have a lot of skepticism and have yet to attempt to convince my doctor (can't do it without a willing doctor to prescribe meds and order certain bloodtests, at an absolute minimum). But my mom seems to be coming around to the idea and I have spent quite a bit of time thinking about how the required changes in my life are do-able.

Or, in my mom's words, I've gone from "there's no way I can do this crazy thing" to "I'm just crazy enough I might try this thing."

If I do it --assuming I can get my doctor onboard-- I plan to start somewhere around my birthday, or perhaps summer solstice (either of which would be highly appropriate).


It's almost impossible to find statistics about success/failure rates on the MP. I have read elsewhere that as many as 3500 people are registered at the website as having started the MP. I also read that the washout rate is 50% because people have a great deal of difficulty with the "herxing." Also, according to the website, many people's intolerable herxing is due to the fact that they make modifications to the protocol, usually in the form of not following the dietary or sunlight requirements, or taking medications or supplements that are contraindicated, or even not taking the prescribed medications correctly.

I think that's perilously close to blaming the victim. If people are failing for those reasons, it's because the research team at the website hasn't done a good enough job at the website of explaining what the protocol is and how to do it. There's a ton of info there, and much of it is hard to digest. But it's not easy for newbies to figure it out. When you're sick, especially suffering from brain fog, that much information is overwhelming and intimidating. Plus it's just plain radical, and requires a significant paradigm-shift to "get" it.

They refuse to post statistics on the website. Sometimes they say that they don't have the manpower to process them, and are seeking grant funding to do that; sometimes they pontificate about how individual disease labels are irrelevant; sometimes they claim that there are hundreds of patients who don't post, and many doctors who participate (in a private forum or via telephone) who are treating hundreds of patients who don't post themselves. And sometimes they even suggest that newbies should quit asking questions like that and get started.

I think that's pretty outrageous. It is perfectly reasonable for someone who is sick, and who is facing a radical treatment that requires years of significant lifestyle changes, and is guaranteed to feel worse on the protocol before getting better, to ask a rational question like: "is there any non-anecdotal evidence that this protocol works for people who aren't diagnosed with sarcoidosis?" Because that's the disease that Dr. Marshall had, and the focus of all of his published research. He's claiming he was cured, which is wonderful, and also that his work on sarcoidosis applies to all of these other conditions. But when I show my doctor a paper called "Antibacterial Therapy Induces Remission in Sarcoidosis," I fully expect him to say, "what's that got to do with chronic fatigue?" If I could also say: ". . . and 350 people with CFS have made it into Phase 3 of the MP since 2002 and are in full remission," that would be significant.

The most recent statistics I've found are from May 2006, indicating that of 77 people with CFS on the MP, 40 have recovered. That's encouraging, but it's also over a year old and is supposed to be a "conservative" count. It's worth seeing though because, according to Dr. Marshall, "the 40%+ 'success rate' cited in my [June 2006] (Karolinska) presentation was regarded as exceptionally good by 'conventional medicine', where a 10% rate is regarded as 'success.' Only we ourselves have selected the objective of 100% success." (There is also a video embedded in the pdf showing the bacteria.)

I understand it's experimental. But the lack of up to date numbers is very discouraging. Most of the info available about patients with CFS on the MP is dated 2004 or 2005. I want to know if those people are better yet.

Tuesday, May 15, 2007

Marshall Protocol, in English

Now, I haven't decided for sure to do the Marshall Protocol. Have to talk my doctor into it first, and I have to convince myself before I do that.

Short version is: Ph.D. clinician claims to have discovered a "bacteria-like" common cause to CFS, lupus, lyme, rheumatoid arthritis, and all related autoimmune diseases. The bacteria supposedly are very tiny (so tiny that a scientist friend of mine takes issue with calling them bacteria) and very sneaky: they live in white blood cells, where the immune system can't find them. The Marshall Protocol involves taking a drug that is supposed to allow the immune system to see the bacteria and start killing them. Also other drugs to assist in the kill-off.

Vitamin D (some of which is actually a hormone) supposedly plays a large role in helping the bacteria to hide, and people with these autoimmune diseases supposedly have a Vitamin D "imbalance" or "dysregulation" (it's a lot more complicated than that). So one of the things you have to do is avoid all ingestion of Vitamin D (no "enriched" food sources, from milk to flour) and all exposure to sunlight. As if that weren't enough, the drugs also cause photosensitivity, so I will have to wear special dorky sunglasses all the time, even indoors. (Actually, those are the new "fashion" frames, so I won't have to wear the really dorky ones. )

And it will make me a lot sicker before I feel better. The Herxheimer Effect is a major part of it, from the bacteria die-off.  Also, it can take two or three years to finish. I am still a little unclear on how long the hiding in a cave part will take, but I think that's at least six months.

But supposedly, at the end, I will be truly cured. I don't know whether to believe it or not. It would be horrible to go through that much misery and still be sick when I'm done. On the other hand I could put up with anything if I knew I was going to be cured. I've been sick for ten years and I don't really want the next forty to be like them.


Does everyone attempt to justify their blog's existence?

I've been thinking about creating one for a long time. Haven't done it because I figure if I'm going to write, I ought to work on something like my unfinished novel.

But I'm researching a new treatment that purports to cure Chronic Fatigue Syndrome, and I've not found any other blogs about it. The treatment is called the Marshall Protocol, and I want to read about others' day-to-day experiences on it. Since I can't find such a blog, I think I'll write my own (assuming I decide to go forward with it), and thereby perhaps help others learn about it.