Tuesday, January 29, 2008

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.

Tuesday, January 22, 2008

T minus 1 day and counting

I start the Marshall Protocol tomorrow!!

The drapery-making experiment was successful and my bedroom and study are now very dark. I have been using smaller-wattage bulbs, reducing it in stages. 30 lux isn't really all that dark; it's like mood-lighting in a restaurant.

Since my experience the other day with flourescent lighting, I've been trying to minimize my exposure to flourescents, using the NoIRs whenever they are unavoidable. This house is principally lit by two methods: flourescents and huge windows letting in lots of natural light. I am planning to stay in my two rooms during daylight, though we are working on making two other rooms MP-compatible too. The biggest challenge is the kitchen/dining area, but we aren't dealing with that right now. With any luck my photosensitivity will lessen within a couple of months.

Today I have a doctor's appointment to get an MP-compatible cholesterol medication (which I've been trying to do for months) and will go shopping to purchase a few more things, plus MP-compatible foods. And I'm going to the chiropractor. Haven't seen him in a while and I've missed him!

Friday, January 18, 2008

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.

Sunday, January 13, 2008

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.

The Met

Yesterday, I went to the Met.

The Metropolitan Opera is broadcasting some of its productions live in HD at movie theaters around the world, and Beaumont is lucky enough to be on the list. For $22 ($20 for seniors, $15 for children 11 and under) you get to sit in a movie theater at Tinseltown with other opera nuts and experience some of the finest opera in the world. It is extraordinary.

The Met did this last year too, but Beaumont wasn't on the list and you had to drive to Houston for the performances, which were often sold out. Travelling even the short distance to Houston for a day trip is not realistic for me, so I wasn't able to go. But just before Christmas, I learned that the Met had come to Beaumont this season. What a Christmas present! I had missed the first one (Romeo & Juliet) but got to see Hansel & Gretel and Verdi's MacBeth.

I could wax lyrical at some length about how marvelous, how magnificent, how sublime it all is, but opera is one of those things that you either love or don't, so I will spare you of all the details; but I will say this: if you have never seen live opera, or if you have never seen a good one, you owe it to yourself to go just once. Check the links above to find out if there's a theater in your area showing the live HD theater broadcasts. It is so much better than watching it on PBS in your living room! It is like you are really there.

Afterwards I went out to eat with some others who were there to talk about the production and enjoy some good food and good company. I made four new friends and I'm really looking forward to the next show, which is in five weeks. Hopefully I will have progressed enough on the MP by then to be able to go!

On another musical note, today at mass my church choir premiered a new choral piece by our conductor. It was gorgeous. Spine tingling! And I can say that the day after going to the Met! We won't be singing but once for the next five Sundays, so I won't even have to miss singing. I have no idea how long it will be before I'm able to go back to church and sing, though I was hoping to be able to make limited excursions in about six weeks. We'll see.

Thursday, January 10, 2008


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!

Tuesday, January 8, 2008


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.


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!!

Monday, January 7, 2008

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.