Feeling good on break!

Just a brief note to say that I have been taking a break from the MP for a few weeks, and very suddenly about two days ago started feeling better. Went almost overnight from being miserable, depressed, lethargic, and sleepy to feeling well enough to say, "pretty good, thanks!" when someone asks me how I'm doing! Haven't said that in a VERY long time. My brain is waking up, I'm able to focus, and I actually have some energy to do some chores and projects! It's amazing! I still have a lot of work to do on the Protocol (starting Year 4), but this break is giving me real perspective. Thank you, Dr. Marshall, for giving me my life back!

manic?

No wonder I don't know what day it is. I was up until 6am last night--I mean today. My mind is just racing. I feel sort of scattered but seem to be able to focus well and even finish tasks. Unfortunately, I am focused on entirely trivial things. It would probably be better if I could focus on something relatively important that I put off for weeks while I was feeling so bad. (I think I'll count "posting on my blog" in the relatively important column.)

I think I recognize this as a pattern from previous times when I have changed the Marshall Protocol meds according to the dosing schedule. When I reduce one of them significantly, it's like I wake up from a dream.

Only now I know: this is how I will feel when I'm well. Not that I have energy, exactly, but things don't seem overwhelming. It would be amazing to be able to count on feeling this way, on having a brain, for days or weeks at a time: I might even be able to do something crazy like start practicing law again. Is that what being well would be like?

I still have some brain fog. I'm having some pretty dreadful memory lapses and I'm still dropping nouns in speech. Numbers still baffle me. I'm still tired, and not rested. (And the insomnia of this phase won't help with that.) I still have joint and muscular pain. Lots of other symptoms I won't bore you with. But I'm having moments, hours even, of mental clarity. The comparison to how I felt less than a week ago is stark.

This is real. The Marshall Protocol is the cure.

onward

I was so brain-fogged the other day when I wrote the previous post that I didn't know what day it was. Not that it matters substantially in the greater scheme of things, but when I wrote "tomorrow," I should have written "today"--but I didn't know what day it was. The good news is that the change in dosage levels that day (Wednesday) has led to me feeling substantially better. All my symptoms have lessened and I've felt well enough today and yesterday to play the piano a little and also--here's the scary part--upload all kinds of crapola to Facebook.

This is more complicated than it sounds because it involved audio and video. Now, I have been a techno-nerd since 1982, and I build my own computers, but I have resisted joining the media blitz on the internet for years. I'm pretty much a luddite when it comes to multimedia, and don't even own an iPod. I hate noisy and blinky things in my web experience and so I use a browser that makes it really easy to turn all that multimedia garbage off by default. What this means however is that I am increasingly having to adjust the content blocker and the plugin stopper for individual websites like Facebook, and for some things I even have to switch to a more popular browser so that things will work, especially if multimedia is involved.

So yesterday I started with what I thought was a relatively simple task: figure out a way to get a certain recording off of a CD and onto my Facebook profile as an MP3. But, as always, things are never simple when Windoze is involved, and it gets worse when you throw in the nonsense called DRM [rant omitted]. I eventually accomplished the goal but it set me onto other ones: figure out a way to capture streaming video for later playback (for free); figure out a way to post other multimedia stuff to my Facebook profile. I spent most of the day today at cnet researching freeware (with a detour to the WayBack Machine at archive.org), discovering the fun at Hulu.com, and revisiting a karaoke site where I recorded a bunch of songs last summer for fun. I still haven't found the right software to capture that stream, but I did find an interface that enabled me to post my karaoke recordings to my Facebook profile.

Just in case you're wondering, I already know how to post my karaoke recordings to my blog. But don't worry, I'm not going to.

3/4 through Phase 2

Tomorrow I start the last level of Phase 2. Hopefully it will last only 40 days.

The past 40 days, as time has worn on, life has become increasingly like the CFS relapses I remember. It's not as bad as when I first got sick (that was like having mono for two years) but it is almost as bad as--to pick a couple of relapses at random--my first 2005 relapse (when I stopped working) and the second one that year (after Hurricane Rita). The main symptoms, besides fatigue, are a heaviness in my chest and limbs, some joint pain, some muscular pain, brain fog, and not really caring about much of anything. Sometimes, usually late at night and depending on the dosage schedule, I get this itchy feeling all over my body under my skin, which usually makes me anxious and restless for a little while. And for the past few days I've been seeing some edema, craving salty foods, and a bit grumpy. The latter could of course be plain, old-fashioned PMS--it's hard for me to judge. In the olden days I used to gain (and lose) as much as seven pounds every month--which at my height and weight is a full clothing size or more.

Although some of these symptoms are annoying, there's nothing truly dreadful. I think the most important thing right now in fact is to maintain an awareness of the symptoms, especially the neurological ones, because as the MP starts killing bugs in my brain it will probably become harder to see the forest for the trees and so keep my perspective.

The most significant thing is that despite the fact I'm "as sick as I was" instead of "feeling better," I know that with the Marshall Protocl, there is an endpoint. It may be years from now, but it will get here. After literally a full decade of blindly hoping that tomorrow, next week, next month, next year I would feel better and be able to live a normal life, it is so much easier now because I know that eventually I WILL be able to live a normal life. There is certainty, not just helpless wishing.

out during daylight

I actually went out this week. I went to get my hair done. My niece is getting married this weekend and so vanity required that I get it cut and colored.

The good news is, all the hormonal adjustments the MP has caused mean that my hair is healthier than it's been in years. It's thicker, smoother, stronger, and isn't falling out or breaking all the time. The bad news is, it's still coming in about half white (it started going gray when I was 27, shortly before I got sick). The good news is, my stylist got the color to exactly the color it was when I was a teenager! Happy, happy, joy, joy! Someday my natural color will be back. There was an 80 year old man on the MP whose hair had been white for decades and it suddenly started coming in dark. So there's hope.

I was out for about four hours and really found the sun oppressive. It didn't make me feel ill, but getting out of the sun was a relief. During the drive home (heading west) I put a scarf over the lower half of my face (along with hat, NoIR sunglasses, gloves, long sleeves, jeans, and boots) and the relief was palpable. When I got home I wanted nothing more than to retreat into my dark bedroom; I even shut the door which I don't usually bother to do. When I shut my eyes I saw flashing lights. Eek! Fortunately the flashing went away after twenty or thirty minutes, and I felt much better. Since then, just a little extra tired.

My niece is getting married on Saturday evening and I will probably be out during daylight for about six hours. It shouldn't be too bad as I'll be well prepared.

MP, week 1

I started the first Marshall Protocol drug a week ago, and will soon be starting the second.

Technically, this means I'm not quite in Phase 1 yet. I'm sort of in-between. The last preliminary.

The MP is divided into three phases. All phases involve a drug that acts as an angiotensin receptor blocker, or ARB. Phase 1 adds one antibiotic to the ARB. Phases 2 and 3 involve adding different antibiotics in various combinations.

The ARB helps my innate immune system to begin functioning properly again. When I start the antibiotic, it will be at a low dose, and "pulsed," meaning that instead of keeping the dose steady so that it's always at the same level in my bloodstream (as I do for the ARB), it is allowed to peak and recede before taking it again. Initially, I'll take one small dose every other day. During Phase 1 I will vary the antibiotic dosage strengths and the time between doses. More importantly, I will learn to manage my Herxheimer reactions, or, as they're called today, immunopathology. This is a highly simplified explanation, of course.

I don't know how long Phase 1 will last, except that it won't be less than six weeks; it takes that long just to progress through the dosing variations. Then I'll move on to Phase 2.

There isn't a direct correllation between which Phase you are in and how you feel, beyond the loose association with feeling slowly better as time goes on. For people like me with chronic fatigue, the current wisdom says that it will probably be two full years before I start to observe substantial improvement. That's a very long time, but as I've said earlier, two years from now I'd still be sick without the MP. But three years from now, I hope with the MP I will be seeing a return to health. (I'm just trying to get this down in black and white, to remind myself later if I'm having a hard time that I need to stick with it.)

Symptoms this week: headaches, lethargy, body temperature dysregulation (cold feet & hands, hot elsewhere), significant photosensitivity (can't even glance at the monitor or TV without NoIR sunglasses), normal hunger/satiety, lessening of hypoglycemic symptoms, restoration of sleeping patterns, and no edema. Symptoms missing: joint pain, fever, sinusitis.

I am not doing much. I didn't even turn on the computer three or four days this week. I have been adjusting to staying in my darkened rooms during daylight. Thursday I have my first excursion into sunlight: I have to go see my GP for my annual physical (which was rescheduled last week). I have hat, gloves, scarf, boots, etc., so I think it's a challenge I can manage.

I know I can. . .

I WILL get there. I'm not sure whose timetable we're on here, but it will happen.

In another bit of synchronicity, yesterday I learned that a medication I was taking that I thought was going to be okay to take while on the MP won't be. I also got a mailing from my doctor informing me that it's time for my annual physical, so they won't renew any prescriptions anyway. I got blood drawn this morning and have my appointment for the physical on Tuesday morning. I think this is going to work out to be perfect timing if I wait and start the MP on Wednesday.

I have started making curtains. The first one was of course the hardest, but now that I have all the preliminaries done and a method established, the rest should go pretty quickly. I got pull-down shades for a couple of rooms and it turned out that the shades, which are cut-to-fit, are exactly the right size as-is. Also, a pair of blackout drapery panels I bought last week and decided I couldn't use for their initial purpose turns out to be exactly the size I need in another place, so I can use them instead of going to the trouble of returning them. Everything's falling into place.

Today I went shopping, and had a terrible headache all day, which was threatening to turn into a migraine (nausea, etc.). The usual meds (including coffee, chocolate, half a hydrocordone, and ibuprofen) didn't help. It was overcast, cold, and rainy, but when I finally decided to head for home I got out my new NoIR sunglasses (the special ones I had to order for the MP). They block all IR, UV, and blue-spectrum, and only allow in ten percent of the visible light spectrum (the other pair only allows in two percent). I put them on and it was like throwing a switch. I could feel the blood vessels in my head, especially around my eyes, relaxing. By the time I got home, my headache was almost gone.

I was amazed, because I'm not taking any of the MP meds yet, so I figured I wouldn't be any more light sensitive than usual. Well, I think I've learned that my "usual" included more significant photosensitivity than I knew, including intolerance to flourescent lighting (in all the stores I went in). I have always hated flourescent lights with a passion! Other people thought I was nuts. But now I know that it's real.

I've been wearing them indoors since I got home, including at the computer (LCDs are backlit by flourescent light), and I feel so much better than I did earlier today. It is AMAZING. I had been using them at the computer about 60% of the time since I got them a couple of days ago. Now I will use them 100% of the time!

Other people have written over at the MP website that the NoIRs are "soothing." I didn't know what that meant. Now I do.

MP checklist

Symptoms: extereme fatigue ("post exertional malaise"), hot and cold. Pain, headache, etc. minimal.

I actually took a nap today, which is perhaps not surprising given the amount of activity I've had the last few days. I don't usually take naps. Really doing quite well considering.

My dad continues to improve. He was able to exert himself for some minimal physical activity today and his brain is sharper than mine and Mom's combined.

I still have three big things left on my pre-MP checklist. I am still waiting for my NoIR sunglasses. I have to get the handicap tags for the cars (tried to do this Friday but was unable to). And I have yet to set a stitch to make curtains! I will get the tags tomorrow, and start on the curtains on Tuesday. Hopefully I can start on Wednesday. I have had success with finding other items that I need (clothing, low-wattage lightbulbs, etc.) and I'm Ready.

countdown

Symptoms: mild headache, joint & muscular pain. Not sleeping well. Cold, tired, a little scared about what I'm getting into. Hunger has slacked off a bit and I actually got full twice yesterday and stopped eating when there was still food on my plate. A very good thing!!

Activity: I went on a successful shopping quest yesterday for boot-cut jeans and also went to choir practice, where I found standing very fatiguing but otherwise did better than I expected. However, a few hours before I left for town, I couldn't handle the idea of going out into the sun for ten minutes for a gentle walk around the back yard with my dad. Have I always felt this way about bright light? I think so, except for the years I lived in Chicago.

The shopping quest victory was something major to scratch off my to-do list. My plan is to wear my cowgirl boots whenever I have to go outside while on the MP (I am, after all, a Texan) but I didn't have a pair of boot-cut jeans that fit. I tried to buy new ones but couldn't find a pair that fit: I'm short, low-rise jeans don't fit (I tried on many pairs), and I need the heavy non-stretch denim that's not very popular right now. In short (so to speak), I need an old-fashioned pair of jeans. I didn't really think it would be that difficult to find them in Beaumont, but I was wrong. I almost bought some Wrangler's at a western wear store but they were too long. I lost count of the number of jeans I tried on at Sears, the Gap, etc. Based on my experiences trying on new jeans, I was wary of buying jeans on eBay: the cuts, fabrics, and sizing have all changed in the last few years.

Yesterday I went to the resale shops and had much better luck. I found TWO pairs that fit out of approximately two dozen pairs tried on. They were both Levi's, and very inexpensive too! And as a bonus, I also found an item which has been on my "I need to get one of those one of these days" list: a globe. It's on a stand, is fairly recent, and has a lot of details far above and beyond what I would have happily settled for-- for $10! Don't you just love bargains? I was wishing for a globe just a couple of days ago when reading a spy novel where the terrorists crossed the border in Vermont and I couldn't recall the exact geography-- and who wants to stop and look up something on Google Earth when you're in the middle of a good book?

On the MP front, I should have my meds in hand this afternoon; still waiting for my special sunglasses and Vit D test results; hope to go get the handicap tag this afternoon; haven't started the curtains.

I posted at least once before on the timing of everything coming together so that I could start the MP this spring, and last night was gifted with another one: after this Sunday (the 13th), due to a variety of reasons which I won't list, my church choir will not be singing but once in the next five weeks. This Sunday we are premiering a new piece our conductor wrote, which I don't want to miss. I was already tentatively planning to start the MP on Monday at the earliest so that I wouldn't miss mass this week, and I have tentatively been planning to hibernate for about six weeks. So it is all working out!

sinking

I forgot to post today's symptoms in my last post. In addition to all of yesterday's symptoms, and feeling hungry, today I feel completely drained, just like in the darkest days of my illness. I was planning to go to town today to do some errands and to do some further prep work at home, but so far all I've managed to do is eat, shower, and read a book. My limbs feel heavy, and I'm going from moments of enthusiasm for the MP to moments of worrying if I'll even make it to the starting line. The worst thing is, there's nothing really I can do to feel better, because if I were to start taking the old drug at the old dose again, it would be a week or ten days before I felt better. So I've just got to stick with my plans for starting the MP as soon as I can get it together.

Another description of the MP

I just read an interview over at Amy's blog with Greg Blaney, M.D. He is a physician who has treated himself with the MP and now treats many patients with it. He provides an excellent summary of the science behind the MP and how it works.

http://bacteriality.com/2007/10/31/blaney/

Another interview on Amy's site describes a constant hunger similar to mine as a symptom that resolved with the MP. I am really looking forward to these hormonal adjustments. Seems like I'm finding a new symptom every day that the spironolactone used to control, but the hunger is still the worst. I am more hungry when I'm almost finished with a meal than I was when I started. It stinks!!

Tough week

This has been a hard week, but I'm moving forward with my MP preparations. I've ordered my special sunglasses and purchased blackout liner to make curtains. I've got hats, gloves, and scarves. Still a few things yet to check off the list, but I'm making progress slowly but surely.

The hardest part of the last couple of weeks has been weaning off of some of the meds I've been taking. One in particular is hard to live without. Some old symptoms are coming back that it used to control; the biggest one is that I am hungry all the time. I get no satisfaction or pleasure from eating, and never feel full, even though I'm eating two or three times as much as I was a couple of weeks ago! (I am afraid to get on the scale.) It's mostly blood sugar and it's no fun, but I know that the MP will fix it in time-- not just mask the symptoms. So I guess it's a reminder of why I'm about to start the MP.

I have been very tired. Lots of brain fog, general malaise, some grumpiness. Also low grade fever, some edema (from weaning off the above-mentioned drug), some joint and muscle pain. I'm weaning off coffee, too, but have had fewer symptoms from that than I expected, at least compared to all the other symptoms. I had some bad headaches this week but that was before restricting caffeine and between pain meds and heating pads, they went away. I think it was just tension.

I am ready to start the MP. Just got to get those last few things done first.

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.

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.

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.

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."

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.

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.

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

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!