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.