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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Fri Dec 9th, 2005 23:25 |
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Well here I am, fully in Phase 1! This has been such a whirlwind experience thus far, having been diagnosed w/CFIDS/FM the end of June, then finding the MP in September. So much to learn about in such a short period of time with such a blastedly foggy brain! Yet here I am! 
FYI, anyone reading this will notice that I’m ramping the mino up from a much lower dose than the currently proposed 25mg. My doctor required that I start at a lower dosage. So, I’m kind of on the same schedule folks were on starting well over a year ago. Since most of them are still around  , I have great confidence that this will work for me too. And, so far I’m herxing very nicely!
Oh, here’s a rather extensive listing of my symptoms for the record. And here’s my Benicar progress report . I did Beni for 2 weeks, then started the Mino.
Fri, 12/2/05, Day 1 Full MP, Mino 3+ mg 10:30 am. *Dividing the mino cap is not an exact science the 1st time around!
Sleep: Sleep by 2. Woke up 10:25. Slept okay w/dreams.
Sx: Head felt a tiny bit fuzzy w/in hr of taking mino. Very slight nausea w/in first hour. In the next few hrs, felt some new sinuse pressure, but no drainage. Then thought my tinnitus was acting up, but it was the buzzing bulb of a lamp. Around 2:30, noticed heavier feeing in head, I guess like pressure. Arms and legs a tad more tired as well. Actually arms and hands are very tired just from typing. Still had plaque on teeth this morning. Saliva yellow when I spit it out.
Drank a little anise liqueur I had left over from 2 summers ago in the evening.(I very rarely drink!) About an inch in a very small glass. The roof of my mouth and inside of my gums started to burn. Then the ridges of the roof became very defined, like they were growing or the flesh in between was shrinking. It felt very ridged and hard. It actually burned my entire mouth and tongue.
Noticing that my bite or teeth spacing is changing on the top. Some top left teeth seem looser – or not as close together. The floss suddenly goes through w/o resistance. My mouthguard used to be very tight on all the teeth, but is now loose on the front teeth.
Energy Level: 80-85%
Mood: Much better, more even. Not as depressed or moody. It may help that I’m alone for a few days, but even so, I think I feel better. Ended up being much more tolerant too.
Other: Played around on computer much of the day. Even tried reading for about 5 minutes – no go. Talked to mom for 1.5 hrs and wasn’t tired! I couldn’t have done that even a few weeks ago. Talked to brother later for 1.5 hrs and still didn’t get tired! And, ta da, I scrubbed down the front stairs and washed them out. I’d been wanting to do that for ages, but hadn’t had enough energy. Now my front stairs AND kitchen floor are clean!
Sat, 12/3/05, Day 2 Full MP, No mino
Sleep: Sleep by 2:15. Woke up at 10:35. Had lots of dreams, but don’t think they were all directly CURE related. *My dreams for months have all been medical and cure-related. On top of that, they've been really boring. 
Sx: Woke up during the night with pretty heavy duty pain and burning in my hips and shoulders. I’d change position and when I did, it’d really hurt/burn more for a little while, until settling down. It may have been part of herxing, but since my joints go back and forth and up and down during the night, who knows? This pain was decidedly new though, so perhaps… Teeth weren’t coated nearly as much, but sputum still yellowish. Sinus drainage– brownish. So there you have it, Barb, sinus infection. Still no noticeable sinus pressure though.
Woke up with roof of mouth actually raw from the liqueur (or herx that’s made me very reactive?) last night. Looked with mirror and the skin is white w/inflamed areas. Looks like a chemical burn.
Briefly around noon - A few minor stomach, edges of ribs pains. A few pangs in lower abdomen as well – kind of like pre-period twinges.
In evening, a few moments of runny nose on L, A little mucus in throat, as well as a few lower back pangs on R. Altogether a fine day. Very minimal herxing – too easy?
Energy Level: 75-85%
Mood: So far so good.
Sun, 12/4/05, Day 3 Full MP, Mino 3+ mg at 10:30 am
Sleep: Sleep by 2:15. Woke up at 8:30 because cell phone rang. (Forgot to leave it out of room. ) Dozed lightly til 9:30. Realized that I probably start dreaming within a couple of hrs of taking the Xyrem. I’m generally dreaming by the time I take the 2nd dose (2.5-3 hrs after 1st dose and 2 hrs after falling asleep). This means I probably get about 4 hrs of deep sleep and the rest is REM or light wakefulness. This is about a billion times, if not more!, better than what I get w/o Xyrem.
Sx: Had none to speak of during the night. Slept with heating pad on feet because they wouldn’t warm up. Was in the upper 50’s when I went to bed, so put feather comforter on with two blankets. Was nice and not too warm! Roof of mouth and inside gums (mainly where the upper right molar was pulled (had old root canal there) still raw, but better than yesterday.
Around 3 – nose a little stuffy, feel a little fuzzy. Stopped an hr later. Fleeting twinges in back of head, right upper jaw, lower back R, and R ribcage.
4:45 Both ribs and upper abdomen – twinging pains. Upper back and neck as well…turned into aching. Headache/pressure on both sides.
8pmish – upper back hurt for about 5 minutes.
Midnight – Bit of headache, upper back in spine
Energy: 80-85?
Mood: Pretty good!
Mon, 12/5/05, Day 4 Full MP, no Mino
Sleep: Sleep by 1:45, woke up 9:20. Fell asleep before turning off lights. Fell right back asleep after 4 am med dose. This has happened the past few nights, which is a good sign – I think. I generally am awake for at least 15-30 min. No noticeable wake-ups either! Dreams seemed relatively normal, even though I don’t remember them.
Sx: No noticeable symptoms overnight, although I was sleeping pretty heavily. Woke up with upper back and neck ache. Feels like muscles are sore and somewhat stiff, spine crackly too. Headache comes and goes. Mild tooth pain twinges R upper. Patch of raw skin still over R upper rear pulled tooth area. Stronger heartbeat when stand up.
Noon – not much. Then upper back and through ribs and head – off and on. Felt more tired and less alive. Early evening - My knees suddenly hurt ROYALLY if left in the same position for too long, they just burn like h*ll when I move them. It goes away pretty quickly though. Note: Out of curiosity, had a sip of a different alcohol to see if that would hurt my mouth the same as the first (didn’t swallow it). It wasn’t as bad, but it did burn my gums and tongue. I wonder about the strange reaction.
Energy: 70? Lower than the few days prior.
Mood: Fine in the morning, started dulling a bit by afternoon. Lower tolerance level, a little more emotional, reactive.
Changes: Mouth irritation clearing up except for the R upper rear “pulled root canal tooth” area.
Tues, 12/6/05, Day 5 Full MP, Mino extended to 3 days (sun exposure – labs)
Sleep: Sleep by 12:45. Woke up 7:30. Should have taken full Beni at midnight, because planned to wake up 8 hrs later, but forgot. Took it at 2:30 when alarm rang. Had WWII dreams much of the early morning. Wanted to sleep longer because tired, but could only lightly doze a little.
Sx: None noticeable during the night. Today have fleeting and mild pains in upper back, ribs, head, and knees (if they stay still for too long). PM - keep hearing a beat in L ear. Like an arrhythmic thump! Intermittent pain in L arm above and around elbow. L shoulder sore, then about 6pm sore and burning.
I should add here that my skin seems to have gotten more sensitive – little nicks and scrapes hurt a lot more than they should. Also, when I shower, I can’t scrub myself the way I used to – it stings! My scalp even stung yesterday when I washed it.
Energy: 70% - more tired today. Can go up stairs, but starting to feel it again.
Mood: Fine early on, funny at doc’s, then emotional, with lowered tolerance.
Wed, 12/7/05, Day 6 Full MP, Mino 6+ mg at 9:30 am. *I forgot to take the 3rd dose at 3 mg
Sleep: Sleep by 1:15. Woke up 8:30. Slept pretty well with fewer wake-ups. Seems that I can wait a little longer between Xyrem doses now and still fall back asleep right away.
Sx: Felt fine after taking Mino at 9:30 am.
Started noticing achiness around 1:30 or so. Solar plexis, or the soft area just below the sternum and over stomach got really sore, especially when pushed. Soreness on rib tips in front got, upper back, actually most of back. Got tired/sleepy as well. Started feeling a little “under the weather.” Took a 40 min nap, which is only the 2nd I’ve been able to accomplish since early Sept! Felt a little better afterwards.
Have noticed a few weird light flashes since yesterday. They occur at the top of the room (when I look up?) and are like flowing lighting flashes with bumpy shadows.
5ish – Low grade fever 99.6. Temp is usu. 97.1.
Also had some weird need to breathe harder or more. I felt kind of like I wasn’t getting enough oxygen. That came and went from 10-1am.
Energy: 70%
Mood: Okay so far.
Changes: Evening – I could actually teach an hour! For some reason, my ability to think conceptually returned. This is a first in months! I’ve been trying to help a kid with a research paper, but until now, couldn’t really grasp the information in the articles. Information for me is generally very fragmented, with my brain holding on to only bits and pieces. I have great difficulty putting the whole picture together – of pretty much anything.
Oh, and the drumbeat in my L ear is gone.
Thurs, 12/08/05, Day 7 Full MP, no Mino
Sleep: Sleep by 2. Woke up 7:15, dozed until 9:15. Sleep was typical – some wake-ups, heard sounds early in morning (usu. sleep through noises that early).
Sx: Morton’s neuroma really kicked in again last night – woke me up. Tried massaging it, but it didn’t help. Whenever it’s flared up during the day, I’ve been able to manipulate the inflamed nerve bulb and can make the pain ease. But when it flares up at night, nothing works but time.
No other symptoms to speak of in morning, early pm. A little bit of neck, upper back and rib tip pain.
4:30 – Feel a little cloudy or fluish. Fever 99.5. A little headache, upper back ache, a little pain below sternum and rib tips, body more tired,
6pm – Pains deep inside chest through to back- behind ribs. Runny nose with some sneezing – unusual for me. All very tolerable. Still feel fluish and more tired. Temp back down to 98.6. Lips getting sore and chapped on the ends.
7:30 – Headache, upper/mid backache.
Later on, just twinges and such. However, mind got really muddled before going to bed. Kept forgetting things like turning out lights, lay down then realized hadn’t brushed teeth, brushed teeth, then realized hadn’t washed face. Did that, lay down again – realized I’d forgotten to set out my meds for my 4 am wake-up. Got the meds, then swallowed my 40 mg Benicar that was intended for the 4 am wake-up, and so on. I’m surprised I remembered to breathe!
Energy: 75-80%
Mood: Good, then lowered tolerance late afternoon through bedtime.
Changes: Morning temp was 98.5. That’s a first! It’s usually around 97.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sat Dec 10th, 2005 08:19 |
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Fri, 12/08/05, Day 8 Full MP, Mino 6+ mg 11:30 am
Sleep: Sleep by 2:10.Woke up 9:30, then dozed until 10:30. Actually woke up to the phone. Woke up a number of times during the night.
Sx: Had nightsweats – hadn’t happened for a while. Morton’s neuroma woke me up again – very painful. Felt groggy upon waking up – unusual. Couldn’t seem to get my body kickstarted for a few hours. Didn’t feel any better after taking Mino either, so maybe I was still herxing. I’ll wait longer than 48 hrs w/the next dose.
Feel fluish, pain in head, chest, neck, upper back, legs, knees. My legs are the kind of sore you get from working out too hard (all I’ve done is walk from room to room), or how I felt after my car accident. All tolerable, but feel more “crummy” than prior days. Runny nose, really chapped edges of lips and desire to lie down and sleep. Oh, and constipated – unusual.
Later pm – Low-grade fever 99.6. Still feel fluish, worsened headache. Migraines stopped w/D and sun avoidance, so this is still WAY better! Some fleeting pains into the upper R teeth. Upper back feels like a little vandal’s in there wreaking some havoc. Upper spine is crackly. I fell down some stairs headfirst when in high school – injured my neck…duh. Put a dent in the wall on the way down too, come to think of it. Had neck and upper back problems for years after that. I’ll bet the bacteria settled in nicely there over the years and they’re extremely annoyed at the moment. I haven’t been able to touch my chin to my chest since then – about a 2-3” gap. It’ll be interesting to see, amongst many other things, if that’ll change!
Evening – herxing diminished! Just a little headache and R eye twitching. Oh, and my knees burn. Tried to help my old student with his research paper again, but the old brain just wouldn’t cooperate. It’s really pretty hysterical not being able to remember how to write papers I used to assign. But I can still spell b*a*c*t*e*r*i*a*!
Energy: 60-70%
Mood: Quiet, don’t want any stimulation (even radio), don’t feel like I care about much right now, feel “underwatery.” I also cry WAY too easily at times. Nothing like weeping to a McDonald’s commercial to make ya feel just some kind of “special.”  Emotions generally feel too close to the surface.
Changes: Inside of mouth all cleared up. And my teeth seem to be shifting yet again. Last week I had some gaps in my upper teeth and my mouthguard was too loose. In the past few days, the gaps have changed or closed and my mouthguard is tighter again. Go figure. Also, since yesterday, I’m not nearly as cold as usual. I thought the weather had warmed up, but it’s me. Last night I only needed 1/3 of the covers I normally use.
*I should emphasize that even though my moods are so variable (started w/the Beni) and I feel rather cruddy, it’s all quite tolerable. Now my poor bf might see it a tad differently...
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sun Dec 11th, 2005 20:37 |
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Sat, 12/10/05, Day 9 Full MP, no Mino
Sleep: Sleep by 2. Woke up at 9:50 to alarm. Pretty decent sleep with some night sweats.
Sx: What a great day! 180 degree turnaround from yesterday. No symptoms to speak of other than a few twinges. Almost forgot I’m sick!
Energy: 85-90%
Mood: Excellent until 11pm. Then turned reactive and rather bleak. The bacteria probably couldn't stand it that I'd felt so good all day!
Did a few things around the house that I’d put off. Then as soon as it got dark, I hit the road and ran a number of errands – no problems driving either! When I can drive, I use my 10% NoIRs. Early October when they arrived, I was worried about hitting someone (actually, almost did!). Now they’re perfect. When someone else drives me, though, I wear the 2%’s. I must say that the world takes on a rather “otherwordly” ambiance through the glasses. They kind of feel like a protective wall or shield between the “real” world and me. They also make it really easy to people watch too, which is very cool!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Mon Dec 12th, 2005 19:06 |
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Sun, 12/11/05, Day 24 Beni, Day 10 Full MP, Mino 6+mg 11:30 am
Sleep: Sleep by 3, woke up 9:30, then dozed until 10:15. Okay sleep, with a number of wake-ups and some not too incredibly boring dreams. Had some royal nightsweats, though, that woke me up – actually had to shower.
Sx: Took the Mino and felt “warm” within an hr, but temp was normal. I guess this is the flush some other folks here feel. Much more draggy today than yesterday’s Wonder Woman turn. Runny nose, some sneezing. Legs and joints back to hurting if they’re in one position too long. Legs just heavy, period. Some upper back and head twinges and aches. Wanted to take a nap – and did!
Later pm – Felt pretty decent w/little signs of herxing, just still draggy. BF drove us to a couple of stores in the evening for some Xmas shopping. I didn’t have to walk much, but seriously wanted to go home after the first stop. Yeah, I was tired, but then again, I really hate shopping, even on good days. Usually order things online, but waited too late for that this year. Hmm, how could I have forgotten to? Oh right…I was busy losing my marbles on Beni!
Energy: Back to 75%
Mood: Pretty good, but with tolerance dip in the earlier part of the day. For instance, I couldn’t manage to get a rubber band around something after a couple of tries and HAD to walk away. Ditto with trying to fit something in a drawer that stuck a little. BF just laughed as I stomped off. Glad to be of entertainment value.
Changes: Took my 3rd nap since beginning of Sept. I actually felt refreshed! I used to feel just horrible after I napped, then wasn’t able to at all. So this is a good sign!
*Tuesday have to go for SSDI review. My last one was 2 years ago. My disability is based on an ailment that I now know was a misdiagnosis of 5 yrs ago. They don't even yet know I've been dx'd w/CFIDS and I've no idea how this will turn out, since CFIDS isn't easy to prove to their satisfaction. Any good vibes sent my way will be hugely appreciated!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Tue Dec 13th, 2005 17:19 |
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Mon, 12/12/05, Day 11 Full MP, Mino – none
Sleep: Sleep by 2:15. Woke up 9:30. No nightsweats! Had really strange dreams throughout the night though. What a change from the yawners I’ve had for a few months. Now I’m actually not sure if I want them this weird! You just might be right, Sun!
Sx: When I got up, I noticed a slight return of the “nursing home” body odor. Hadn’t had that for a few weeks, I don’t think. I spat out blood as well, which means I clenched my teeth pretty hard during the night - something that had really eased up over the past couple of months. Perhaps it was in conjunction with the strange dreams? I’d probably lose my teeth if I didn’t wear the mouthguard. Legs still heavier and somewhat sore from waist down, both shoulders hurt some to move, upper back a little sore. All very tolerable. Weight Loss - Lost 2 of the 5 pounds I’d regained, so back down to 118. There’s no apparent pattern to it…I’m eating more than ever!
4ish – Low-grade fever and fluish feeling starts. Seems to be a pattern of getting a little feverish in the later afternoon. It generally clears up within a couple of hours.
6:30 – First esophageal spasm in a month or so. Very mild and passed very quickly. They can sometimes hang around for quite a while and be almost excruciating! Something that helps is a tip my grandmother passed to my mother who passed it to me – hot water. Slowly sip hot water when having an esophageal spasm – it can really help to minimize or calm it down.
Energy: 75-80%
Mood: I’ll feel fine until I’m stimulated by something. Unfortunately, that can just be just about anything from a random thought, to the sound of a car alarm or a sneeze. My intermittent (more often than not) irritability and lack of tolerance are two of my strongest symptoms. To go from being an extremely calm and patient person to this is just awfully hard to either fathom or deal with, even though I understand that my brain’s herxing. Knowing I’m not alone in this makes me feel better, although it also saddens me that so many have to go through it.
Changes: Something I’ve forgotten to write in – my salivary glands seem to be functioning better! This must have improved over the past couple of weeks, because I haven’t woken up with my mouth and throat glued together for a while! I also don’t have to pry dry eyeballs open in the morning anymore!
I’m going to try 20mg Beni every 6 hrs. I’ve been taking 20mg QO4, but the few times I’ve gone past the 4 hrs, I’ve not noticed anything adverse. Want to see if it’ll help the brain herxing some. Has anyone noticed if the lowering of Benicar helps the emotional stuff?
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Wed Dec 14th, 2005 17:41 |
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Tues, 12/13/05, Day 12 Full MP, Mino – none (3rd day)
Sleep: Sleep by 2:45, woke up at 9 to alarm. Slept pretty well, with mild nightsweats. Dreams weren’t as weird and disruptive either!
Sx: I’ve extended my mino to three days today. A.M. was okay, then headache and upper back pain started in, felt fluish much of the day. The usual low-grade fever around 3, a little chest pain, and some short bouts of tinnitus. All very tolerable. I’ve forgotten to mention that indeed, like many others, I feel very lightheaded and see black spots on the periphery when I stand up too quickly. Seems I stand up too quickly pretty much each time –just can’t remember! Can hear my heartbeat swooshing in my ears for a minute or two as well. Nothing close to really fainting though. In the store the other day, my bf and I were both looking at something on a bottom shelf. We stood up at the same time, then grabbed onto each other because we were both dizzy. We just stood there swaying in the aisle like two skinny trees in a wind. We laughed so hard.
Energy: 70-75%
Mood: The usual merry-go-round (for these days).
My disability review was moved to Friday, which is good, because I just found a whole new sheaf of papers I still have to fill out! My lord, the paperwork is mind-boggling!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
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Posted: Thu Dec 15th, 2005 20:08 |
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Wed, 12/14/05, Day 13 Mino 9+mg 10:15 am
Sleep: Sleep by 1:15 . Woke up 10. Actually set alarm for 3:30am, but slept through it. The snooze function finally got me up an hour later. This means that I slept pretty well for 4 hrs on my 1st first Xyrem dose! AND, 5.5 hrs on the 2nd! Wow! Had a lot of dreams – all related to a stupid film I watched last night. I just realized that the other night when I had a load of weird dreams, they followed watching another movie I didn’t really care for. Will only be able to watch grade-A movies at night, I guess.
Sx: Got pretty tired/heavy by 12:30. An all body heaviness. Underwater kind of sensation. Slight clearing and burning of nasal passages. 2 pm – chest (sternum and below sternum pangs) through to back. Short-term L shoulder throbbing down arm. Swollen glands. Weaker and more tired than as of late.
Went to late dinner (10pm) to meet bf’s relative who flew in for a day. Really wanted to stay home, but also really wanted to see aunt. Ordered a small steak, salad. But, also ate two small rolls with butter, so probably got a little D there. I very rarely eat bread and haven’t eaten much dairy since starting the MP. It was darned tasty though! I almost had to be carried home afterwards; I was so tired and my legs could hardly move.
When starting to avoid D and sunlight, I was paranoid about eating out and getting hidden D! A while back, in an Indian restaurant, I told the waiter I couldn’t eat certain foods. Very authoritatively, he said he’d help me in any way possible. So I actually asked him if their cream used in a sauce I wanted, had any Vit D or over 6% Vit A. The waiter just stared at me like I was insane and I have to admit, that as the words were coming out of my mouth, I realized how nutty I sounded. After a longish silence, during which I think my bf hid under the table, the waiter recommended a different dish, which I immediately accepted! I’ve certainly calmed down since then.
Energy: 65-75%
Mood: Okay mixed w/cranky
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Tue Dec 20th, 2005 19:51 |
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Thurs, 12/15/05, Day 14 Full MP, Beni Q6H, Mino – none
Sleep: Sleep by 2:30. Woke up 9:45. Because of late meal (10-11), I think the Xyrem (sleep med) wasn’t well absorbed. It took 1.5 hrs before I could fall asleep. Slept okay from 4-9:30 though. Lots of dreams.
Sx: Nothing much by way of pain. Just very fatigued. Went back to bed around 2 and slept for 2.5 hrs. Felt a little better after that, but no appetite. Just some minor upper back and chest pains. Then abdomen started in. I thought it might be herxing, but started my period instead. Cramps turned pretty awful w/in short period of time, so took 600 mg ibuprofen, which is the only thing that works for me. However, it’s the first period that’s been “on time” in well over a year, so that’s good! (All the above symptoms are very typical for period days, by the way, not necessarily herxing.)
Energy: 60-70%
Mood: Mixed. Had little sense of humor much of the day.
Fri, 12/16/05, Day 15 Full MP, Beni Q6H, Mino – 9 mg midnight (made it 2.5 days)
Sleep: Sleep by 1:10, woke up 10. Lots of dreams - mainly bacteria treatment related to some espionage.
Sx: Some nightsweats alternated with being chilled. Morton’s Neuroma flare woke me up, then later, period cramps woke me up. Had some upper back pains at 7 am, but took ibuprofen for cramps, so that was taken care of. I very seldom take pain meds, but will for severe cramps. Changed the mino to midnight. Wanted to see if it made a difference sleeping through any initial reactions.
Energy: 70-85%
Mood: OK and mixed. Seem to be doing a little better with the Beni at 20mg QO6. Still pretty easily riled or irritated, but I can control my reactions a little more, which is great.
Had to go to SSDI review today. I wasn’t feeling too bad at all – bummer? But, had loads of sunlight exposure – the most since starting the MP. Wasn’t any way around it. It was a good test to see how I respond, and I didn’t! Just a very slight “headache behind the eyes.”
Sat, 12/17/05, Day 16 Full MP, Beni Q6H, Mino – none
Sleep: Sleep by 1:30. Woke up 9:11, then dozed until 9:45. Lots of dreams, MP related, with clandestine activities. Yup!
Sx: 10-12am: Body a tad more tired and heavy. Arms tired when typing, slight headache. Afternoon: Not tired. A tiny headache, some very light chest/sternum pain through to back – about 5 minutes. Nothing else for rest of day.
Energy: 80-90%
Mood: Back and forth, mixed.
Was completely stir crazy for the first time and couldn’t figure out what to do with myself. Nothing worked, and believe me, I tried everything. Reading, computer, cooking, talking, writing, cleaning, etc.! I just desperately wanted/needed a change of scenery. So by 3:30, bf said it was cloudy outside, and we drove down the road (about 7 min) to some stores where I could walk around and see faces other than his and my own. Covered up, including K-cream. Then I people watched, which is fun anytime, but with perma sunglasses, even better. Tried on some jeans to see what it feels like wearing some that fit (everything I have is totally baggy). If I only knew when I’ll start gaining some weight back…would love at least one pair of pants to fit! I’ve dropped to a size 4, which is probably a first since elementary school…and no, I’m not bragging! My poor chest has gone as well!
I’m not sure what to do when I feel so good, barring the ever-present emotional herxing. It was the first time that I couldn’t think of anything to do to keep my mind and body occupied. The “prisoner” feeling was very strong and I’ll have to find some ways to deal with it if/when it happens again. I’d rather be herxing and feel like cr*p, knowing that some progress is being made! Then again, I may really come to rue those words someday soon.
Sun, 12/18/05, Day17 Full MP, Beni Q6H, Mino 12.5mg at midnight - oops
Sleep: Sleep by 1:45. Woke up 9, then back to sleep until 10:20. Lots of dreams. The last one woke me up because it reminded me that I had to call a credit card company!
Sx: Roaring Morton’s Neuroma during the night. Then nothing to really speak of. Really no herx symptoms all day. Maybe a slight headache, but that felt more due to yesterday’s sun exposure than anything. Took 12.5 mg at midnight, since I misread my schedule (or rather, made a mistake in it). The two prior 9mg doses did very little anyhow, so I didn’t get worried about the increased dose. I didn’t think I was brain-fogged, but it so rarely announces itself ahead of time!
Energy: 85-95%
Mood: Okay and mixed.
Mon, 12/19/05, Day 17 Full MP, Beni Q6H, Mino – none
Sleep: Sleep by 1:15. Woke up 9:52, then dozed til 10:30. Dreamed a lot, but don’t recall anything being CURE related. Woke up a little too much for my 4 am dose, and it took a while to fall back asleep.
Sx: Had a little burning in my left toes during night, but very minimal. Around 3, got a little tired, felt warm and flushed. Didn’t feel like talking. Normal temp. Lasted about 1.5 hrs, and that was about it for herxing.
Energy: 80-90%
Mood: Not bad! Still, when I couldn’t fit something properly into my trunk, I had to walk away and let bf put it in. Geez!
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Wed Dec 21st, 2005 02:09 |
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I switched from Beni 20mg crushed Q4H to Q6H a week ago to see if it’d help the emotional herxing. No one commented, so I thought it would be okay. To be honest, I’ve no idea if I can attribute the slight betterment in mood to the lowered dosage or not. I do know that I’m no longer dizzy when I stand up too fast and that my physical herxing has lessened a great deal – to the point of being barely there. This makes me suspect that the lowered Beni isn’t as effective at bringing down the 1,25-D and weakening the bacteria.
…I just read Dr. Marshall’s Dec. 18th comment in Jo’s progress report:
As far as I am concerned, the Benicar dose recommendations have not changed for over two years. I am way too busy working with the new papers, but my understanding was that the possibility of reducing the dose was to be mooted to folks having trouble with too much herxing from Benicar alone.
So, I’m back to Beni 20mg Q4H. Should know in a few days if it’s better to stay at this dose.
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Wed Dec 21st, 2005 20:08 |
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Tues, 12/20/05, Day 17 Full MP, Mino 12.5mg midnight
Did 1 week Beni Q6H and went back to Q4H
Sleep: Sleep by 1:45.Woke up 11:30. Slept through alarm and missed my 4am Xyrem & Beni dose. Was wide awake at 6, but took 20 min to decide whether or not to take another Xyrem dose. Started feeling very anxious about work and my future, so figured an anxiety attack at that time of the day wasn’t worth it – took the 2nd dose and slept again around 7. Sleep was pretty decent with lots of dreams.
Sx: No noticeable herxing overnight, except perhaps some slight joint and back aches. Sleeping through alarm was unusual though, so must have been sleeping more deeply than normal. During day, off and on slightly fluish feeling. Slight aches and pains in lower, upper back, as well as sternum, chest. Nothing much.
7:30pm – some strong shooting pains in head for a couple of minutes.
Energy: 85-90%
Mood: A few low tolerance moments, but mainly either quiet or depressed. Just adore that slippery feeling of “what’s the point?” I know it’ll pass, so just slog on to the next moment and the next without dwelling on the feeling of futility. Eventually I find something else to occupy my mind, even if only for a short while. The lack of motivation on my part remains very bothersome and I do wish someone would come and sort through all my papers and business and get things straightened up around here! Whole days just slip by without anything to account for, and that didn’t begin with the MP, it started much earlier. I’m often amazed that I used to live a very to somewhat productive life, even with all the problems I had. It’s completely impossible for me now to imagine being productive and creative again…a contributing member of society. Right now it’s just good old hope and a big dollop of faith (much of it blind) that carry me from moment to moment and day to day.
Last edited on Wed Dec 21st, 2005 20:19 by Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Sat Dec 24th, 2005 00:34 |
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Wed, 12/21/05, Day 18 Full MP, Mino – none, begin Beni crushed Q4H again
Sleep: Sleep by 2, Got up at 9. Slept okay with LOTS of dreaming. Heard many morning sounds as well, which means I wasn’t sleeping very deeply.
Sx:: Runny nose (mainly L side), a little headachy, mid-upper back sore, legs heavier and little sore, hips a little sore.
Energy:: 80-85
Mood:: Mixed as is typical these days.
Evening: Went to see a movie (King Kong) before the weekend crush – pretty good, pretty long (3 hrs 7 min) and especially with my mixed moods – VERY sad at the end. Stumbled out of the theater wanting to sob, but managed to hold back the full bucket of tears.
Also bought a pair of jeans that fit! Yahoo! They’re the ones I’d tried on a few days ago and this time were about 60% off! I felt just wonderful walking around in something that fits. It sounds so shallow, but I don’t care! I have nothing in my closet that’s close to fitting and have to tie all my pants up around the waist to stay on. I took my jacket off for the first time outside because I didn’t have a big old bunched up droopy butt! Actually, it’s really nice that just a pair of jeans could make my day that much brighter. So simple.
Since I saved some money (how easily I convinced myself) I went back and bought a hat as well, seeing as how I’ve been wearing my bf’s this whole time. Note: The hat has wool and angora in it – I’ve always been “allergic,” but not now! The hat feels divine and covers my eyes and ear wonderfully.
Thurs, 12/22/05, Day 19 Full MP, Mino – 12.5 mg midnight
Sleep: Sleep by 2, Woke up 8. Lots of dreams.
Sx: Felt pretty darned good all day. Slight off and on headaches, intermittent mid-back to center chest pains, upper back crackly and stiff. By late afternoon, was pretty darned tired. Legs heavier and by 6, couldn’t do much but sit around.
HOWEVER, clear brain from morning ‘til dusk!!!!! Yup, that’s right, no brain fog today!
Energy: 85-90%
Mood: Pretty darned good! Just a few moments of irritation here and there, but they occurred when I was seriously provoked and don’t count them because my reactions were minimal and entirely within reason. Yahoo!
I prepared some new MP material for doc that I not only understood, but was able to present very clearly today. He was quite pleased and told me I looked better today. He is a very receptive doctor who basically learns about the MP from his patients. It’s actually the first time a doctor has listened to me with both respect and interest. But, I always have to remember that I’m ultimately responsible for understanding and implementing the MP – as most of us must be.
Was exposed to about 2 hrs of indoor sunlight at the docs (had to wait and do some more labs – hid as much as possible), and 1.5 hrs outside (car, etc.) Got home and actually prepared a lesson for a student – one that I’ve not been able to wrap my brain around for the past couple of weeks. In fact, I planned it so well, it’ll work for the next few weeks (hoping I still understand what I did). Then I taught for 1.5 hrs straight (on the phone) and know that my student went away having learned something good and clear from me. It was just wonderful to have the feeling of competence back after so many weeks/months of murkiness. This day was a window into my future and so very welcomed!
Of course, after that, I was so pooped I could barely sit up and watch TV. No matter, it was a GOOD DAY! I also noticed little effect from the sun exposure.
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Sat Dec 24th, 2005 22:52 |
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Fri, 12/23/05, Day 20 Full MP, Mino – none
Sleep: Sleep by 12:45, 1st dose Xyrem 12:15, 2nd dose 3:30. Got up 8:25 – phone.
Woke up at 3:30 just before alarm rang for my meds. Got up for b-room and it took a while to fall back asleep. Just before drifting off again, I could feel anxiety seeping in. I wonder why I feel so anxious at that time of the morning, but am okay later? Was sleeping lightly in the morning and heard my answering machine – couldn’t reach phone in time. It was a father telling his daughter he was sorry he missed her call and that he loved her. I feel so badly for him and sure hope his daughter believes him when he says he called her back.
Sx: Back achy during the night. A little nightsweaty – especially my head –go figure! Woke up to backache through to sternum/solar plexis. Pre MP, I’ve woken up to backaches like vises around my ribs that turned into spasms when I breathed too deeply. I haven’t had those spasms since avoiding sun/D, but this backache is the same tightness.
8:30 - When I got up, headache started (started in the back and reached out to the sides). Arms more tired this morning, and definitely feel quiet.
10am – Add to the above, sharp chest pains kicking in now and then, as well as waves of upper abdominal and rib tip pains. And some pains down the legs and neck.
Afternoon- Pretty tired. Initially, not sleepy tired, but great need to just lie down. Body is heavier and slower, it’s an effort to keep upright. Finally lay down around 2, read a little and fell asleep until 4. Weird and upsetting dreams actually awakened me.
5:30ish – Herxing lessened and got energy back. Drove to store for last min Xmas food items and such.
Energy:70-80%
Mood: Pretty darned decent – calm.
There’s one thing about wearing sunglasses at night – those pockets of dark areas get REALLY dark. Got out of my car in the parking lot with them still on, and stepped on something hard, yet soft, that slid away from my shoe. It felt like I’d stepped on a small animal and I jumped about 3 feet in the air – something I’d not have been able to do even two weeks ago, by the way. Had to take off the glasses to see what it was – a partially eaten apple. I was so relieved! Put the glasses back on and started shaking my leg to get the gook off! Then looked up to see people staring at me over their cars. I guess they saw a tall very skinny woman wearing sunglasses in the dark, take a big old random jump, pause, and then start shaking. Definitely on drugs, poor thing… Should she be driving? In the store, I was only happy to be incognito.
And to anyone reading this, Have a great holiday weekend!
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Wed Dec 28th, 2005 01:42 |
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Sat, 12/24/05,Day 21 Full MP, Mino – none (extended to 3 days for Xmas)
Sleep: Sleep by 1:45, woke up 12:10. When I woke up for 2nd Xyrem dose and Beni at 4, I couldn’t go back to sleep. I’d been having some extremely stupid dreams beforehand and my tummy felt very acidic. The Xyrem just wouldn’t kick in – this is a first! I lay there until 5:40, then decided to take another dose (3.25) to see if that’d kick in. It finally did around 6 or so. Slept (not great) until 12.
Sx: Not bad at all. Some headachy, backachy stuff, but very tolerable. Legs a little weaker/heavier, a few chest pains, feel quiet.
Perked up for Xmas Eve, we made a zillion calls to relatives, opened up gifts and yes, I ate some chocolate. My mom sent See's chocolates and I realized that it'd be a sin not to try one...or two.
Energy: 80-85%
Mood: Still pretty good! The hyper-reactive aspect has really lessened! My patience is returning! Or perhaps it’s a greater control that’s returning. Either way, it’s all good.
Sun, 12/25/05,Day 22 Full MP, Mino 25mg 11:30 pm
Sleep: Sleep by 3, woke up 11. Loads of dreams.
Sx: Very good all morning and day. Some typical tiny aches and pains, but almost totally unnoticeable. BF and I cooked a 14 lb turkey and various dishes. I was full of energy and good mood! The fact that I remembered how to cook – something I used to love, but started having trouble with a few years ago because of memory – was wonderful. I even made a roux! Then, while washing dishes at 7:15pm, I’m told I went down like a tree in a mudslide. Suddenly, I could barely stand and started hurting EVERYWHERE. And I mean everywhere…from the last remaining roots I have in my teeth to under my toenails. I was helped into the living room, lay down and couldn’t move. I just curled up and wondered what the h*ll was going on!
Aha! We’d just taken pictures w/friends about 1/2 hr earlier. Close-ups with flash AND I wasn’t wearing my glasses! I think we took about 4 pictures and I couldn’t see after each one, which was odd – yeah, in another life. I’m so dumb! Anyhow, I blamed my malaise on the flashes. Later, about 9pm, I realized I hadn’t taken my Beni at 8! Quickly took it, then saw an extra one in the container, meaning I hadn’t taken my 4pm Beni either. I do, however, remember the alarms going off for each dose! Man, I can’t even count alcohol and overindulgence as an excuse. Just me, myself and a few million bacteria on the brain! Anyway, I figure that with the camera flashes and loss of Beni blockade, I didn’t stand a chance. Obviously, this was a double variable for the cause of my symptoms, but I’d been wondering all along how I’d feel if I lost the Beni blockade…and all my nightmares were answered. YIKES!
Quickly took 40mg Beni, fell asleep for a while and woke up feeling a little more human. Wavered on taking my mino dose, then thought I was feeling well enough to handle any consequences. And I was right. Took another 20mg Beni and by the time I went to bed, felt pretty human.
But, even with that, it was a GREAT CHRISTMAS!
Energy: 90-40-70%
Mood: Excellent
Mon, 12/26/05, Day 23 Full MP, Mino – none
Sleep: Sleep by 2:15, Woke up 9. Didn’t sleep well – many wake-ups and dreams. I still wake up at least 10 noticeable times/night, but suspect it's more than that. It’s been worse for the past couple of days – maybe has to do with the increased mino?
Sx: Felt fatigued, heavy and pretty inconsequential until about 5 or so. Then picked up some energy around 6 and took a walk to the store down the road. Splurged on a couple of specialty rolls (rarely eat breads) for the 4 lbs of turkey salad made from our 10 lbs of leftover turkey. I should add that we’ve purchased non-egg mayo and it tastes good! Felt better throughout the evening.
Outside of the fatigue, most other symptoms were transient and quite light - mid/upper back, chest/sternum, upper abdomen, and some tinnitus. For the past few days, though, I’ve experienced very very sharp bolts of pain in my head. They come and go for a few minutes a day – generally in the evening. I instinctively shut my eyes and don’t move. When I open my eyes again, both arms are invariably held out in front of me, as if to ward off some kind of impending danger – it’s weird! I had migraines before the MP, but don’t think I ever had these kinds of pains. Am only too glad they’re so short!
Energy: 65-85%
Mood: Pretty darned good!
Last edited on Wed Dec 28th, 2005 07:48 by Alayne
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Wed Dec 28th, 2005 21:55 |
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Tues, 12/27/05, Day 24 Full MP, Mino – none, Beni 20mg crushed QH4
Sleep : Sleep by 1:15. Woke up 9:30. Took 4.5ml (bigger) Xyrem for 2nd dose, to see if it’d give me 6 instead of 5 hrs. It did, but the sleep quality was still not great. Many wake-ups, tossing and turning, dreams. Rats!
Sx: Not bad at all. Transient and light mid-upper back, upper abdomen, chest/sternum, headache. Tummy’s been a tad gurgly the past few days, but I think it’s because I’ve eaten various wheat products – normally abstain. Oh, I also had some sharp, fleeting pains in my right ear, like I imagine an ice pick might feel, if one were to have such a fortunate experience. I then recalled having this very pain over the years, but not for quite a while.
I’ve also noticed that my body – skin, muscles, bones – have become very sensitive over the past while – touch either hurts or is terribly ticklish – rarely comforting. I mentioned earlier that I can’t scrub myself like I used to in the shower, but, I also can’t scratch an itch normally, or it hurts. If my bf pats me normally on the back, I have to pull away because of the pain. Then, just lightly touching my ribs has you peeling me off the ceiling, and lightly poking my legs has me screaming with laughter. The nerves are all over the place! Plus, I’m also getting a little claustrophobic again. I used to be terribly claustrophobic, but had largely overcome it in the past few years. Just sitting close to anyone makes me uncomfortable now. I assume this is a mild resurgence of a past affliction that’ll pass once again. Better be!
Decided not to take Mino this evening because I started herxing again. My feet suddenly started going hot, numb, and tingly while watching a movie – no matter where I moved them. Then I got really tired and draggy. Waiting until tomorrow. Will see how I sleep.
Energy: 80-85-75%
Mood: Good! So much more tolerant and less reactive. It’s pretty great!
Improvement: Noticed that my joints don’t immediately stiffen up and grow painful if I keep them still. This must have eased up already last week or even earlier!
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Thu Dec 29th, 2005 17:57 |
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Wed, 12/28/05, Day 25 Full MP, Mino – 25 mg 11:45 am (went to 2.5 days because was still herxing)
Sleep: Sleep by 1:15, Woke up 11. Lay down for a while before taking the Xyrem, but couldn’t fall asleep. Just fatigued. Then, must have slept through 3:45 Beni and 2nd Xyrem dose alarm. Opened a dismayed eye at 6, took a Beni and only a partial Xyrem dose. Didn’t want to sleep too long, because was supposed to teach a student.
Many vivid dreams, wake-ups, lots of tossing and turning. Sleep quality’s diminished the past few days, which pleases me to no end – NOT! It’s all just part of the deal though. Falling asleep on my own, and then staying asleep?…it’s been so many years that I actually can’t imagine it, even in my most creative state of mind. I do know that when the MP “fixes” this, life will feel more than radically altered. So much to look forward to!
Sx : Mid-upper back quite stiff and sore upon getting up. Took 25mg mino with hot tea. Within 1/2 hr, felt pangs in front ribs and sternum/solar plexis, tiredness, lethargy, and heaviness set in.
2pm – Add headache and rib tips aching. I used to have bouts of Costochondritis (rib cartilage inflammation), which now reminds me of the sternum and rib tip pains.
5ish - Started feeling stronger again, then off and on until bed.
Think some of my weight loss may be due to the skin loss of my lips! Geez, the Sahara has nothing on this. The edges are so dry, they feel like prickly shards of glass, and the insides shed off huge soft flakes. On top of that, they burn! This has been going on for a couple of weeks, with some days worse than others. They fully peel 2-3 times/day and for a few minutes, I’ll have perfectly fine looking (yet burning) lips, then the molting process begins anew. I’ve tried a myriad of lip balms (all natural). Slather them at night and wake up with them still slathered – just tight and burning underneath. This herxing is pretty fascinating stuff!
Bf announced my “nursing home” odor was in high form today. Oh joy for all around me! I suppose a “nursing home” odor is better than that of a pig farm , but it’s still pretty weird to smell funny…even when you wash!
Was supposed to teach a student at noon…felt too rough. I need to have some animation in my voice and couldn’t conjure up much more than a monotone. So, pushed it till tomorrow…we’ll see.
Energy: 70-80%
Mood: Just fine, interspersed with a couple of teary moments due to absolutely nothing except brain herxing
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
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Posted: Fri Dec 30th, 2005 22:58 |
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Thurs, 12/29/05, Day 25 Full MP, Mino – none
Sleep: Sleep by 12:30, woke up 8:20, got up 9. Went to bed earlier to see what it’d feel like. Pretty much the same. Actually, it was a better night’s sleep! I didn’t wake up as much during the night and the dreams weren’t quite as vivid. That was nice. Did pop awake for a brief pain symphony by my Morton’s Neuroma.
Sx: During night – As previously mentioned, my nighttime Morton’s neuroma flares are akin to how you think a hot knife stabbing the ball and toes of your foot would feel. My eyes just pop open, I wonder why I’m awake, then feel the pain, and think, “Well, that’s really awful and excruciating,” rub it, but that never helps, then slowly drift away again. I’m sure it’s part of herxing, since the nighttime act only started after avoiding sun/D. Plus, nighttime flares are extremely rare, since the inflammation is caused by pressure (during the day). On top of that, the pain is much worse than what I’ve had during the day.
AM - Head feels swooshy, can sense my heartbeat in ears. Lower-upper back aches and pangs. Head grows cottony – not brain fogged, but feels filled with stuffing…hard to describe.
3ish and on: Mid-upper back/neck twinges and crackles. Circled around ribs to sternum. Legs stiff (not sore) when I sit for a while. This stiffness is actually rather par for the course, and I’ve forgotten to mention it. I often look about 50 yrs older when I get up and start walking. Takes a few minutes for my body and legs to regain their mobility.
Has anyone had this symptom or something similar? Sometimes when I laugh hard (yippee, I’m laughing again – sometimes too much ), I can’t catch my breath. The air just keeps going out, but I can’t draw it back in until I’m rather desperate. Then it feels/sounds like my throat or airway are very constricted when I can finally start inhaling. It takes a minute or two before I can breathe normally again. I used to have asthma, but this doesn’t feel like that at all. No wheezing or lingering symptoms. Like the expelling of air has caused a vacuum, making the inhalation difficult. I’m not worried about keeling over with blue lips, but would love to hear if anyone has experienced this!
Energy: 80-85%
Mood: Pretty decent, with a good 1/2hr dip. I’m grateful for the mood betterment…so grateful. I realize, however, that even though they’re better, I’ve still a ways to go before the moods are stable again. I never know when I’ll over-react, under-react, lose all conception of patience, laugh too much, etc. All part of this MPer’s daily curriculum with no as of yet discernable pattern! Ah, which brings me to that oft bandied about word here...patience.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sat Dec 31st, 2005 16:35 |
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Fri, 12/30/05, Day 25 Full MP, Beni 20mg crushed QO4, Mino – 25mg 11:30am
Sleep: Sleep by 1:15, woke up 9:30. Had many dreams that were actually interesting, not disturbing and NOT cure related! Several times during the night I actually knew during the dreams that I was dreaming. I racked my brain during one sequence, trying to remember how I knew the woman I was talking to. I thought, “Oh yeah, she’s from the movie the other night…just as nice as her character.” So, I was semi-conscious within my dreams - something different and quite enjoyable.
Sx: Nothing much by way of physical ones to report. Just passing aches and pains in my leg joints and muscles, lower-upper back, headache, solar plexis/sternum, ribs, upper abdomen. All very light.
Main symptom – LETHARGY, pure and unadulterated. Utter lack of ability/motivation to accomplish anything (even the dishes, which I’m fanatic about). Couldn’t be bothered to cut up veggies for meals, skipped my daily fruit as well. Living room’s a mess, I sat here unmoving from the sofa, answering the telephone was a chore and making tea or conversation even worse.
At some point, though, I thought all formerly gained ground would be lost if I didn’t accomplish at least two things today, seeing as how the year’s almost over…just two. Ah, a challenge…which two? Somehow cutting through the mists of my so-called brain, I called the gas company to complain (they misread my meter!) and cut my own hair (couldn’t be bothered to go to a salon). Triumph! Two goals met and back to the sofa.
My gas bill’s been lowered! My hair looks like a confused shrub.
Additional New Year’s Resolutions…Identify goals with greater care and find a hairdresser.
Energy: Mental energy-30% (throwing myself a bone here) Physical energy – 80%
Mood: Not bad, not bad at all. A little embarrassed. Methinks I’ll wear a hat for the New Year’s shindig.
HAPPY NEW YEAR TO ALL!! OUR STORIES AND LIVES WILL BE SO DIFFERENT A YEAR FROM NOW!
Last edited on Sat Dec 31st, 2005 16:48 by Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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edj2001
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| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
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Posted: Sun Jan 1st, 2006 12:49 |
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Happy New Year Alayne!
Ref your comment: I was semi-conscious within my dreams. Do a search on "Lucid Dreaming". You achieved a dream state many people search for. I read about it several years back and even bought this electronic head set that went over the eyes while you sleep. Rapid eye movement, indicating the dream state, would turn on a low level flashing light within the headset that was inteneded to alert you that you were dreaming. I did achieve lucid dreaming ocassionally but just for a short while in the sleep/awake transition. The head set was considered a teaching tool as they said you should be able to learn how to put your self into a lucid dreaming state. Other things, and then sarcoid, put this interesting project on the back burner for me. Try to keep and develop this skill. It may offer a portal into the subconcious or maybe a "controled subconcious" or maybe just a good time while sleeping  .
Gene
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| propafenone Armour proscar Guaifensin | 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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Aunt Diana
Moderator
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Posted: Sun Jan 1st, 2006 15:28 |
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Hi Alayne,
Happy New Year. You and I are pretty much in sync....I started taking the mino Dec. 11th. and I relate to many of your symptoms. Although, I thank my lucky stars I do not have your lip problem...that must be awful. I hope it clears up soon.
I can't believe the dreams I've been having.....some of them have been so real that when I wake up it takes me a minute or two to believe that I was dreaming. These dreams must have some significance....I have no idea what, but it seems to be a fairly common phenomenon on this protocol
Yesterday, a mino day, I felt so good (no symptoms) that I'm considering upping my dose...have to talk to Aussie Barb about that of course. I don't want to be jumping the gun.
Meanwhile, I watch your posts with interest and I'll try to keep you informed if I experience anything helpful.
Here's to 2006 being a year in which we regain much of our health....I'm very optimistic.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Tue Jan 3rd, 2006 21:18 |
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Gene, thanks so much for the “Lucid dreaming” link. I guess I’ve had plenty of lucid dreams over the years, in that I’ve known I was dreaming. Those were in my “healthier” years though, so perhaps this is a sign of good things happening on the MP! I’d say about 70% of my dreams now are kind of lucid, in that I know I’m dreaming, but the night I wrote about was the most clear. However, I can’t change the dreams or stop them, which would be a bonus, seeing as how I mainly dream of cures and the MP these days!
Diana, the dreams can be nuts, eh? Our brains must be figuring out all sorts of things we’ve no control over. I stopped trying to analyze mine, since they’re mainly cure related anyhow and it’s pretty obvious what they’re about. Thanks for mentioning my lips…they’ve actually improved in the last day or two to the point of only molting once a day now, instead of 2-3.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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