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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Wed Jan 18th, 2006 20:29 |
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Sun, 1/15/06, Day 60 Beni, Day 45 Full MP
Beni 20mg crushed q5.25h, q8h for sleep, Mino – 37.5mg 12 noon.
Cleared up yet another mistake - this is actually my 6th dose.
Sleep: Sleep by 2. Woke up 1/2 hr before med alarm rang, then woke up every 40 mins or so after that, finally getting up at 9:30. Last night I decided to indeed try and listen to a "delta sleep wave inducing" CD I purchased out of desperation sometime last year. Since my little stereo burned up, I dug out my 18-year-old portable CD player (now I know why we shouldn’t hold onto some things), plugged some recently borrowed earbuds into it (yes, I cleaned them!), and prepared to fall into a blissfully rejuvenating sleep. Well that, or at least a less dream-filled sleep, as Jillian suggested. I woke up before my 4:15 alarm, took my meds, and realized I couldn’t remember dreaming yet! I then proceeded to jolt awake every 40 minutes or so. I fiddled with the volume, at one point found the CD player under me, another time an earbud had freed itself and I thought it was a bug on my face, and so it went. I finally pulled the earbuds out around 8, but didn’t turn off the CD player, because that would’ve involved too much coordination. Still, I kept waking up and finally realized that the old CD player makes a loud grinding noise when the CD finishes and replays, jolting me out of sleep. So, until someone gets me a new stereo, I’ll not know if the music works or not. Plus, wearing earbuds in bed isn’t the most comfortable way to go.
Sx: Had a tiny headache and upper abdominal pain this morning, but it was so minimal, I decided to take mino again. Dumped a 50mg mino cap onto my little mirror, measured and cut it like a pro, then for the first time in my newfound mino cutting profession, breathed the mino all over the counter. I debated licking it up, but thought there might be some hidden bacterial action there, so started over.
Herxed within 10 min of mino - R ear ice pick stabs, lower-upper back/neck muscle & bone pain, ant bites in left calf (I swear, these buggers are EVERYWHERE), mental status alters – i.e.: can’t think straight. Slow build up, then…
3:30 – Underwater, cotton-filled head, Head actually feels like it’s pulsating, eyes are hot, arms tired. Faster heart rate begins, body feels hot.
5:30 – Ant bites in hands, mainly R one. Increased crackly spine from mid back to neck. Sides of ribs sore to touch (‘til now, it’s generally been the front). Nasal passages suddenly clear so much, they tingle and burn when I breathe! Tingly burning L knee.
7 – slightly runny nose, but can still breathe very clearly
Evening – All of the above symptoms, but milder. Add to them a sharp pain from mid back through to mid sternum. Notice some extremely tender points on front rib tips.
Mental Energy: 65-75% I was asked to proofread something today. No problem, I thought…for about one second; then I saw the paper. It wasn’t long, it wasn’t too complex, it was familiar information, but my brain went south. What should have taken 15 minutes, took a long hard 5 hours.
Phys Energy: 75-70%
Mood: Pretty good. Buttons were pushed a few times and I managed to calmly walk away, so to speak.
Mon, 1/16/06, Day 61 Beni, Day 46 Full MP, Mino – none, day 2
Sleep: Sleep by 2:15. Woke up around 8, got up tired at 9:30. Had a number of indirectly CURE related dreams, but they were relatively interesting. A few remembered wake-ups, one to a Morton’s neuroma flare that had me gasping and clutching. I hadn’t had one for a few days, so was hoping they were gone. Of all the aches and pains I’ve had, this one is by far the most intense. If it lasted longer than a few minutes, it’d be completely intolerable.
Started waking up around 8 or so to outside sounds. I think the only way to get longer sleep is to go for earplugs. That’ll be my next experiment, after I buy my “shake awake” alarm clock for under the pillow. Otherwise I won’t hear the alarm for my 4 am meds. Note, it’s been pretty chilly here in LA - for LA. Woohoo, down in the 40s at night! I wore double fleece again all day yesterday, but last night, was again too warm with just one blanket, then around 9, got chilled again and threw on the fleece – and a hat.
Sx: Mid back – neck crackly and sore. It hurts my spine to look straight up...so I don’t, except to test the herx.  Ribs still pretty sensitive on the sides and have continued very sore spots on the tips of the front ribs.
2 – Pretty decent upper mid back through to chest pain. Feels like a fist in there, just squeezing away. I can’t tell if it’s cardiac related or not. Headache, some random ant bites. Continues this way for rest of day. Herxing seems to be finally lessening on this dose level.
Mental Energy: 75% with a 10 min flash of 85%! Could do some math…kind of! However, quite suddenly after I did the basic calculations, my brain stopped “working” again.
Phys Energy: 75-80%
Mood: Decent, with some flashes of emotion. Funny, after doing the math, I felt very edgy and intolerant. I can spend the entire day not talking or listening to anything/anybody and my mood stays even. Then I go and try to do something with my brain and it’s often too stimulating and my mood plummets. Or someone sneezes… This is one reason why a yearlong induced coma would come in handy.
Tues, 1/17/06, Day 62 Beni, Day 47 Full MP, Mino – none, day 3
Sleep: Sleep by 2:15, slept through 4:15 meds alarm that rang until 5. Got up at 10. A pretty darned decent sleep! Only a couple of remembered wake-ups, nice dreams.
Sx: Felt great getting up! No noticeable herx aches and pains. Actually felt motivated enough to clean up Xmas decorations and some other things that have gotten in my way for weeks now! Internet connection was down  , so this actually made me have to do something else . Had a long phone conversation without tiring and really felt good. I hadn’t talked to this friend since the summer, and he of course thought I sounded perfectly fine.
And so I did, until 3:30. The herx hit me harder than usual, I think because of the very stark comparison of feeling so good to so bad within a few minutes. I felt like a bomb had gone off inside me and almost immediately had to lie down. I couldn’t even talk, except to tell my bf that I couldn’t talk. That lasted about 3 hours, then I became more functional again, but unable to complete anymore tasks. I still ached until going to bed.
Mental Energy: 85-75% The mental energy wasn’t an increase in conceptual thinking or anything like that. It was a surge of motivation that I’ve not had for so long! A desire and ability to actually do some things that I’ve avoided for ages.
Phys Energy: 85-70%
Mood: Good, with some edginess that increased while herxing hard. I then reduced all possible stimulation, which helped a great deal (silence, no talking, listening, etc.). Edginess was replaced with marked patience in the evening, so go figure.
Last edited on Wed Jan 18th, 2006 23:43 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
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Thu Jan 19th, 2006 19:22 |
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Wed, 1/18/06, Day 63 Beni, Day 48 Full MP
Beni 20mg crushed q5.25h, Mino 37.5mg Q72H, 7th dose, day 1
Sleep: Sleep by 2:30. Woke up 10. Good sleep! Only one remembered wake-up, normal dreams that I can’t remember! Sweet! 
Sx: No herxing when I got up and really wanted to stay that way for a while. Was sorely tempted not to take a mino and it took me a couple of hours to make myself do it. Yesterday’s 1/2 day of being able to accomplish some things around the house felt so good!
Didn’t have the immediate warmth and underwater feeling from the mino. Around 3, had some chest pain. Then around 5, some pain under the front lower ribs, and shooting pains in lower right sides of abdomen (felt like the ovary, but who knows?). Later mildly fluish feeling and mid-upper/neck crackling and twinges. A few fleeting ant bites as well.
The herxing today was much less than the last doses. The aches/pains were pretty minimal and/or short-lived. The biggest herx was from 4:30-8, when I just had to lie down and not move. I literally couldn’t move! I’ve no idea where my thoughts were during that time, other than, “If a fire beaks out, I wonder if I’ll be able to move then?” I’d like to think that I’d be able to move in an any emergency, but man, that feeling was a weird one.
Mental Energy: 75-60-75%, with probable blips of 80%. Was able to write a few things that needed taking care of.
Phys. Energy: 75% Took a late evening stroll down the block, because I haven’t been out of the house for a few days. It felt good, but realized I wasn’t quite “up to snuff” in the stamina dept. and was glad to get home. The walk was all of 10 minutes. Perhaps I should try taking a walk more often, to be sure I keep up some muscles. It’s sometimes hard to tell if I don’t want much physical expenditure because my body’s telling me that, or if it’s plain old lack of motivation.
Mood: Just fine!
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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 Jan 23rd, 2006 20:52 |
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Jan 19-22, Days 49-52 full MP.
Beni 20mg crushed q5.25h, Mino 37.5mg - none
I decided to extend my Jan 18th mino dose to 5 days. I wanted to see if I’d continue herxing, or would experience a couple of good days and be able to see any improvements. I haven’t even been on the full MP for 2 months yet, so didn’t expect miracles, but am very glad I did this.
Days 1-3: I herxed as usual, albeit physically more mildly than with the last dose. I’m hoping to be able to move to 50mg this week, but will see.
Days 4-5: The herxing was extremely minimal.
Good – My brain (my main nemesis) cleared up! Okay, not perfectly, but I could conceptualize, write, speak, listen, etc., SO MUCH BETTER! I was able to do some writing I’d not been able to even comprehend since I first tried last September. This is a definite sign that my brain’ll come back!
Bad - I stupidly pushed myself too hard physically. Too much on Fri and tipped the bucket on Sat. Collapsed by Saturday evening and was very fatigued on Sun. This was my own fault and a good lesson. Even though I didn't do "much," I guess I still have a hard time determining how much is too much.
Good – I’ve rebounded quickly! It didn’t take me the typical days or weeks or months to recover! By Sunday evening, I was able to drive and go shopping and carry groceries! Today? Still feel it, but considering the fact that the last time I pushed myself a little too hard, I ended up in bed for two weeks, I’m feeling darned great!
Recap: So, my brain functions were much better and even though I pushed myself too hard physically, I recovered much more quickly than usual. Those are two HUGE improvements and I’m very glad I tried this. Plus, it was nice not hurting all over, if only for a little while!
And now I’ve taken another mino and will resume the bug killing. Yippee!
Last edited on Mon Jan 23rd, 2006 20:54 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
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Tue Jan 24th, 2006 23:49 |
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Mon, 1/23/06, Day 68 Beni, Day 53 Full MP
Beni 20mg crushed q5.25h, Mino-37.5mg 8th dose
Sleep: Sleep by 2:30. Woke up 8, 9, 10. A few nocturnal wake-ups as well, lots of dreams, but decent ones. Sleep med (Xyrem) didn’t knock me out last night. Usually I take it and eventually my eyes cross and I sleep. For the first time, my eyes didn’t do that, so I finally turned out the light and went right to sleep. Hmm, something changing?
Sx: No physical symptoms to speak of, other than the typical fatigue/heaviness that accompanies the illness. Note: I'm not herxing on this 1st day of Mino, so that's a change. I usually start herxing within the hour, or at least a few. Will see what tomorrow brings and will hopefully be up to 50mg in a couple of day!
Mental Energy: 80-75%. Felt pretty clearheaded all day. Had long talk about the MP with someone and after about an hour, realized I couldn’t finish my sentences well because would forget why I’d started them. Noticed word recall difficulties and such, but all in all, I was able to talk lucidly and clearly about the MP. What is exciting for me is that the person is now investigating the MP for herself and will spread the word to some other CFSers she knows!
Phys Energy: 70-75%
Mood: Great!
I must say again how pleased I am with my progress! These past two Mino-free days, and I guess today, just really showed me that I’m on the right path! Well, it’s not that I thought I wasn’t, not at all. I guess it’s just incredibly fine to not only “know” it, but to “feel" it! Wow!
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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
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Posted: Wed Jan 25th, 2006 20:08 |
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Tues, 1/24/06, Day 69 Beni, Day 54 Full MP
Beni 20mg crushed q5.25h, Mino-37.5mg none, day 2
HEADLINE: IT’S A MIRACLE!! I SLEPT WITHOUT DRUGS!!
Sleep: Sleep by 12, Woke up 10:45. I felt sleepy on my own last night!!! YES!! To be honest, it was actually a confusing feeling that I had to figure out because I haven’t felt sleepy at nighttime on my own for so long. I truly cannot recall the last time I slept at night without drugs.
Normally I just take my meds and wait for them to knock me out. But a gut feeling pushed me to just lie down and turn out the lights at midnight. I remember lying there and wondering what would happen, and the next thing I knew, it was 2 am! Okay, it wasn’t a perfect sleep and I woke up A LOT during the night. Add to that several rounds of nightsweats. BUT IT WAS ALL DRUG FREE! Guess my internal thermometer was a tad confused, as I also got very hot during the night and had to take off fleece and blankets. Was still too hot after that, and had to alternate sticking arms and feet out from quilt. Had a bazillion dreams as well, but fell back asleep each time – ON MY OWN! So yes, in terms of quality sleep, it wasn’t the best or the deepest, but the fact that I did it without drugs is AMAZING!! I can hardly wait for tomorrow night!!
Sx: None to really write home about. Feel pretty fine physically, just the typical easy to fatigue feeling. Talked on the phone and paced around for at least an hour. The pacing tired me out, but I probably walked a lot more than usual. Later in day felt a little chest pain and a little rapid heartbeat, but very minimal. Took blood pressure at pharmacy – 90/60. Excellent and close to my normal BP.
Mental Energy: 80-85%? It’s not always easy to determine this. I’m not working on anything complicated today, but still feel more clearheaded than usual. Some of that I’m sure is due to the fact that I’m not herxing much.
Phys Energy: 75%
Mood: Good with some anxiety. Anxiety’s due to upcoming financial difficulties and as of yet no solution, so I figure it’s perfectly normal to feel this way. If anyone has suggestions for “at home” work opportunities that don’t require a consistently working brain, I’m all ears! Oh, I’m also still surprisingly quick to tears (not sobbing, eyes just fill up) when it comes to “Ah gee” moments on TV or films.
Did I mention that I slept on my own last night?!!! Long live the MP!!!
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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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Aunt Diana
Moderator
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Posted: Wed Jan 25th, 2006 21:18 |
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Hi Alayne,
Congratulations on falling asleep....I remember you replied to my post when I realized I was falling asleep naturally, and how excited you were at this possibility for yourself.
I think, from my experience thus far, this is an improving and changing situation.....I still need to take sleep meds frequently but I also find myself not waking up at night. I am having coherent dreams, very interesting and dredging up lots of forgotten things, and falling back to sleep easily if I do awaken. It's really interesting and quite amazing. Not to mention, wonderful now that I think about it.
Here's wishing you....good dreams and easier sleep.
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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 |
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Posted: Thu Jan 26th, 2006 19:43 |
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Diana, thanks for pointing out that it's an improving and changing situation. The next step will be when my non-drugged sleep actually becomes rejuvenative! The thought of truly sleeping through the night is almost beyond my realm of comprehension. It is all pretty wonderful though, isn't it?
Wed, 1/25/06, Day 70 Beni, Day 55 Full MP
Beni crushed 20mg q5.25h, 40mg q8h for sleep, Mino 37.5mg - none, day 3
Sleep: SLEPT AGAIN ON MY OWN!!!! Sleep by 3, Woke up 12. Okay, I woke up at least 25 times during the night/morning and had loads of dreams, but NO SLEEP MEDS once again!!! It’s just amazing to feel sleepy all on my own. In fact, I’ve realized I’ve felt sleepy by 10 for a few days, but didn’t identify it with a “normal” nighttime feeling and ignored it. It’s just been so long since I’ve slept normally that I’m now having to readjust and remember what I should do when I’m sleepy. Funny, eh?
Sx: About 5 minutes of minimal herx and some right eye twitching, so I’ll up the mino to 50mg tomorrow. It took 8 doses q72h at 37.5mg before feeling I could move up.
Rummaged through files, put some things in order, and by 4:30 was very fatigued. I’m also thinking that even though I’ve slept on my own, it hasn’t been highly restorative. Guess I’ll have to wait a while until that happens.
Mental Energy: 80-85%. Then probably 70-75% for the evening.
Phys Energy: 75-60%
Mood: Good. Later was too tired to be even irritable when provoked.
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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: Wed Feb 1st, 2006 20:29 |
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Thurs, 1/26/06, Day 71 Beni, Day 56 Full MP
Beni crushed 20mg q5.25h, 40mg q8h for sleep, Mino – 50mg 11am, Dose 1
Sleep: Sleep by 1, Woke up 10. Took sleep med because I was very fatigued yesterday and wondered if it had to do with my newfound and pretty unrefreshing sleep. Yes, it’s exciting to know that I may eventually consistently fall asleep on my own, but 2 nights of constant wake-ups is exhausting! I was very fatigued by 3 yesterday and could hardly move by 8. So, not getting sleepy on my own, I decided to take the Xyrem and get a more decent night’s rest. I feel better this morning.
Sx: None of the usual herxing within a few hours. 1:30 noticed that my left middle finger went almost completely numb from the 2nd knuckle to the nail. Then saw that the entire finger had gone almost completely white as well. Took a picture – the finger looks frozen! This lasted until 2. Then the finger turned darker than the others. Posted about it here. Seems the finger herx is a Raynaud’s Syndrome symptom.
Later on some headache and rib/chest pain. Nothing bad.
Fri, 1/27/06, Day 72 Beni, Day 57 Full MP
Beni crushed 20mg q5.25h, Mino 50 mg – none, day 2
Sleep: Sleep by 2:30. Woke up 10, then 11:30. Slept pretty well. However, noticing that the Xyrem doesn’t knock me out like it usually does. Now I have to remember that I’m supposed to be knocked out, so turn off the light and fall asleep. The Xyrem quality of sleep, while definitely not perfect, is far better than what I got sleeping on my own those 2 nights - although it was very cool to see that sleep changes are afoot! The next time I'm sleepy on my own again, I'll definitely go without meds. Eventually, this'll iron itself out - I'm confident in that!
Sx: Nothing much at all. Some very fleeting L ear stabs, general aches and pains. Mino can have an accumulative effect and since I took the 2 extra days off before this dose, I’m thinking the Mino had a chance to completely leave my system. I’m wagering the herxing will increase with the next dose or two as the Mino accumulates again. Will see.
Mental Energy: 80-85%. Could focus better and accomplished a few things like putting laundry away, making the bed, scanning, sorting through jeans to be given away.
Phys Energy: 80% Do feel it after a few minutes of laundry folding and bed making, but a little rest and I’m back.
Mood: Very good, but not too difficult to rile me.
Sat, 1/28/06, Day 73 Beni, Day 58 Full MP
Beni crushed 20mg q5.25h, Mino 50mg 12am, Dose 2
Sleep: Sleep by 2:45. Woke up 10:15, got up 10:45. Many interesting and different dreams. All different situations, but each one based on some kind of underground movement or espionage. A number of wake-ups, but slept more comfortably than usual – not too hot, not too cold, no nightsweats, etc.
Sx: Had absolutely none. Switched to q48h for this round because the herxing was so minimal. I’ve been feeling really good and it’s time to get the herx going again! Started feeling the mino around 3. Back started getting sore, head heavier and cottony. Yes, herxing increased for the day!
Sun, 1/29/06, Day 74 Beni, Day 59 Full MP
Beni crushed 20mg q5.25h , Mino – none, day 2
Sleep: Sleep by 2:30. Woke up 10:30. Slept pretty well with some good dreams. Actually went to bed at 12, hoping to get sleepy on my own. Read book until 2, then still wide awake, took the Xyrem. I’m trying to keep a relatively “normal” schedule going, meaning sleeping at night and up during the day. Lends a semblance of normalcy to the otherwise "strange" lifestyle.
Sx: Herxing is still pretty minimal. Some chest (cardiac?) pain, rib tips sore, slight headache, L ear stabs, slight runny nose, crackly and sore mid-upper back and neck. 2 instances of Raynaud’s – L middle numbish white finger. The first one last 6 minutes, the 2nd one lasted 2 minutes.
Mental Energy: 85% with lapses. I’m finding myself able to think a little more clearly more of the time on this dose. A little more clearly and a little more motivated! I am making some headway with bringing some order back to my home. It’s very slow going, but at least it’s going!
The mental lapses are moments like this. I was leaving the house and went to turn off the radio. Hit the button, but the radio didn’t turn off. Hit it again, music still on. In the meantime I’m thinking what a drag it is that the radio’s kaput and I guess from now on I’ll have to unplug it when I want it off. I tried to turn it off at least 8 times, then stood up, thought of something else (focus not being one of my strong points), looked back down and realized I’d been hitting the “ON” button. For those moments, “ON” meant “OFF” to me. Quite literally. It seemingly took a break in thought to reverse that brain glitch.
This also reminds me of how I started forgetting where my car horn was when I began avoiding Sun and D. I’ve had my car for three years, but suddenly, when I needed to honk, I’d hit the center of the wheel instead of the thumb position. My reactions were based on my old car that I’d had for almost 9 years, not this one. On top of that, both cars were/are automatics, but I started gripping the gear handle like I wanted to shift – all cars before my last two were standards. The herxing/adjusting brain is so fascinatingly multi-symptomatic.
Phys Energy: 80%! Went for short walk last night. Made sure I paced myself well. Was tired afterwards, but recovered by morning.
Mood: Good mixed with hypersensitivity.
Mon, 1/30/06, Day 75 Beni, Day 60 Full MP
Beni crushed 20mg q5.25h, Mino – none, day 3
Sleep: Sleep by 2:45. Woke up 9:45. Had anxiety dream about finances and had to get up. No nightsweats, yet found myself pretty warm and had to remove a blanket.
Sx: Sore rib tips, mid-upper back and neck muscle and bone pain, Raynaud’s white finger again – brief. Knees freezing up again if I sit too long – painful to move.
Evening – mid back to neck pretty sore and achy. Lower back and upper buttocks sore as well. Chest and rib aches and pain front and back. It hurts deep inside my chest, especially if I laugh. Rib tips even more sore.
Mental Energy: 85%. I keep realizing how hard this is to judge. I used to do logic problems to exercise my brain. They have a difficulty range of 0-4 and I did the upper 3’s and 4’s. These days if I do one a few times, I can sometimes do a 2, but quite often can’t do even that. Today I got one 2 and missed a 2. Don’t really know how to judge my mental energy then. Perhaps these should be my “mental energy” monitors. However, if I do that, then my Mental Energy is theoretically 50-60%, so I’ll just keep making things up as I go along.
Phys Energy: 80%
Mood: Okay I guess, unless spoken to…how sad is that? I alternated sadness, dourness with some laughter. Am often much better by myself. Am dealing with a difficult situation these days that’s very emotionally draining, so subsequently physically taxing. I know it’s not helping me heal and can only pray that with time (sooner, rather than later!), it’ll get better. We all know that herxing’s enough stress on the body!
Tues, 1/31/06, Day 76 Beni, Day 61 Full MP
Beni crushed 20mg q5.25h, Mino 50mg 10:30 am, Dose 3
Sleep: Sleep by 2:50. Woke up 10. Slept pretty well with decent dreams. Was very cold going to bed, but very warm when I woke up at 4:30. No nightsweats though!
Sx: Nothing immediate. A few hours later, some runny nose, chest/back pain. Around 5, suddenly dropped like a stone. Chest, ribs, heart, back pain stronger, and just lost my starch, so to speak. It’s always so strange when that happens. I’m talking one minute and lying on the floor the next because I suddenly can’t support my body. I dragged myself to the sofa and eventually fell asleep until 7:30. It took until 8:30 before I could very stiffly get up again. By 10 or so, I was okay again – so to speak. I think I’ve been getting more easily fatigued on the 50mg dose.
Mental Energy: 75-85% Was able to help order some very important papers and remember what I was doing most of the time! However, forgot a number of other things I was supposed do.
Phys Energy: 80->60->70%
Mood: Good for most of day. Later evening prone to irritability. Last edited on Wed Feb 1st, 2006 20:31 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: Fri Feb 3rd, 2006 22:05 |
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Wed, 2/1/06, Day 77 Beni, Day 62 Full MP
Beni 20mg crushed q5.25h, 40mg q8h (sleep), Mino 50mg – none, day 2
Sleep: Sleep by 4:30. Woke up 8. Tried to sleep on my own, but wasn’t even remotely sleepy, so took one dose of Xyrem to sleep for at least a few hours. Slept okay for 3.5 hours with many dreams.
Sx: a.m. - Mild mid-upper back and neck aches. Arms heavy. Later afternoon: heavier chest, rib, mid-upper back & neck pain. Headache. Legs very heavy.
Evening: Same as afternoon, then eased around 11:30 pm.
So many here talk about a strange body odor. Mine has been an off and on “nursing home” odor. My guy says it’s like a cloud around me, but when he gets really close, the odor dissipates. Anyone experienced that? Anyhow, I was told yesterday day that my current off and on odor is “like a meal he once cooked and didn’t like.” After some discussion and a lot of giggling, this was later clarified as a kind of “curryish” smell.
My knuckles won’t crack anymore and I posted about it here.
Mental Energy: 80-85%. Could focus better, even though dog tired.
Phys Energy: 75->65%->75
Mood: Good and even, with a 1-hour (7 pm) dip into dour and angry.
The other day a friend I hadn’t seen in a long time dropped by. I learned later that he told my guy that I looked pretty ill. That’s the first time someone’s said I look sick (except for my mother who was rather upset by some recent photos). My friend thought that maybe I was embarrassed about not looking good. I told him later that “looks” are quite far from my mind these days, but it was actually nice, in a perverse way, to hear that I actually look ill. Like everyone else here, over the years I got so tired of hearing, “But you look great! You can’t be sick.” Jillian recently looked in the mirror under a brighter light and found she looked ill. She put a smiley face next to that statement. I thoroughly understand that smiley face.
Thurs, 2/2/06, Day 78 Beni, Day 63 Full MP
Beni 20mg crushed q5.25h, 40mg q8h (sleep), Mino 50mg – none, day 3
Sleep: Only needed 1/2 of sleep med!
Sleep by 3:15. Woke up at 1. Slept through 5:30 alarm (it was on snooze, so I guess I slept through it a number of times!). Woke up at 8, took 40mg beni (2.5 hrs late), skipped 2nd dose of sleep med, put in earplugs (lot of car alarms this morning), and slept pretty well until 1. Many many dreams, but fun or interesting ones. People in dreams kept telling me I had a funny odor about me. All described it differently and not a one mentioned curry.
Sx: Mild mid-upper back/neck aches. Looking up hurts neck to mid back. Heavyish legs. Some chest pain (cardiac) as well, with some mild jumps/skips. Rib tips sore, but better than last 2 days. Mild headache, can feel it in sinuses as well. Side/back ribs became quite sore in the evening.
Mental Energy: 85% in terms of focus ability!
However, suddenly started spelling phonetically and just entirely incorrectly. For example, delicious came out “delishis,” two tries at thanks came out as “thatnks” and “Ghtnk,” and down changed to “doenw.”
Undedidted: Thank goodness for shepllecheck! JGreat, I can’t even spell chsoeldl spellcheck. Lor hrlod me.
Next day’s trasnlsation:
Unedited: Thank goodness for spellcheck. Great, I can’t even spell spellcheck. Lord help me!
I can see that I won’t be back to teaching anytime soon.
Phys Energy: 70-75%. Felt stronger today.
Mood: Okay with some real grouchy moments.
Last edited on Sat Feb 4th, 2006 01:58 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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Aunt Diana
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Posted: Sat Feb 4th, 2006 01:08 |
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Hi Alayne,
I always like reading your posts. I had forgotten all about the weird body odor, but I used to have that, years ago, early days of lyme, but everytime I would start a new antibiotic regime it would go away, usually within days...I also had foul breath....and a terrible taste all the time. But all that has gone away.. I hope forever.
When I would stop taking the antibiotics the smell and bad taste would always return. I remember my "new boyfriend" at the time asking me why I brushed my teeth so much. He's now my husband and he has his own peculiar smell when he gets symptomatic.....he smells like yogurt, or more likely, a baby's regurgitated milk smell.
Strange symptoms and I imagine they are all part of this illness. I was about to say "neurological" but I'm not really sure...since others can smell it, could that be neurological?
Anyway, just thought I'd share some of my rambling thoughts with you.
Heres to an end to all of them soon (symptoms, not thoughts).
____________________
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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jrfoutin
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Posted: Sat Feb 4th, 2006 03:05 |
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Alayne,
You are so funny! Your spelling moment reminded me of a hand written note early in the MP when I spelled even easy words skewampus. I haven't done that for a long time now. Never a great speller (I usually focus on something else), I still do typos with computer keys (you might have already noticed). Some days are better than others, but hand written typos from brain herxing for words like "and" are long gone (hopefully).
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Alayne
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Posted: Thu Mar 2nd, 2006 03:02 |
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Wed,2/1/06 Full MP 91 Days!
20 mg Beni crushed Q5.25H, Mino 75mg QO3, cycle 6, day 2
Thanks to those who PM'd me asking if I'm okay! That was just so nice. And yes, I'm okay and very sheepish about not posting my progress for so long. I've no idea what stopped me, other than perhaps a misplaced sense of rebellion, then some work (I will post about that), and now, just plain old unmotivatedness or serious lack of desire to catch up. However, I know that isn't helpful to those who are following others in Phase 1, so I'll do my best over the next few days to catch up as much as possible.
I'm doing very well though, and will be able to report on obvious improvements! Cheers! 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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Aussie Barb
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Posted: Thu Mar 2nd, 2006 03:07 |
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Thanks Alayne,
please dont feel duty bound to catch up gone by dates. it may be too much effort for you.. better to put your effort into your recovery.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Alayne
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Posted: Thu Mar 2nd, 2006 03:29 |
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Oh thank the good lord, Barb! You know, I was just wondering what it'd do to your poor eyes if I actually caught up. I recall you recently wrote that a lot of black is tough for you, so it would actually be a disservice to you if I indeed tried to catch up.
Ah, the relief! 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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tom
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Posted: Thu Mar 2nd, 2006 03:38 |
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Alayne,
I second that. We all know the cyclical nature of this recovery. If your sleep patterns and recovery cycles vary, as I personally experience, so will your desire to post. Assuming you stay committed with the protocol, the rest should be secondary.
Keep slugging away. I’ll be rooting for you.
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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sunflower
Guests visiting Phase 1/2/3
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Posted: Thu Mar 2nd, 2006 04:33 |
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hey alayne,
so glad to see you back on the board. i just have to ditto the remarks by barb and tom; sometimes posting continuously is just a pain and too darn much trouble. personally, i find it difficult to read exceptionally long, detailed posts, anyway. i'm happy you are doing well and are seeing improvement already (wish i was ). bye for now...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Alayne
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Posted: Thu Mar 2nd, 2006 22:34 |
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Thank you so much Tom and Sun! The guilty feeling has definitely lifted. I'm learning to be more forgiving of myself when I just can't manage to do something, but the not writing was tough. It's the one thing I've kept constant.
I apologize in advance for all the black, but figured I'd catch up some from last Saturday. I'll do two installments and later post on my improvements.
Sat, 2/25/06, Day 102 Beni, Day 87 Full MP
20mg Beni crushed Q5.25H, Q8H for sleep, 75mg mino – cycle 5, day 1 – 12:30am
Sleep: Sleep by 1:10. Lots of dreaming. Woke up a little tired at 9:30.
Sx: Intermittent rapid and/or stronger heartbeat. A little achy in the back ribs and front rib tips. Passed out (slept) about 2 or so. Was talking, then got incredibly tired and was asleep within seconds. Slept for two hours and felt much better. Not too much herxing later, in the sense of it really affecting me much. I think that since we’ve all been through so much pain and cr*p already, what we experience as mild pain might be pretty bad for the “layperson.” So, the mild herxing that we hardly notice, if at all, might be about what a “normal” person could handle. I guess I mean that I figure I was herxing today, even though I didn’t feel like utter doo doo.
Mental Energy: 85% - pretty good. I wrote quite a bit and caught up with some reading.
Phys Energy: 75-80%
Mood: Very good with a couple of angry instances. In other words, when provoked, I didn’t find it as easy to ignore the situation.
Sun, 2/26/06, Day 103 Beni, Day 88 Full MP
75mg mino – none, cycle 5, day 2
Sleep: Sleep by 2:10. Woke up 10:15. Slept through 3:30 alarm (was set wrong!) and woke up on own at 5:30 and took meds. Many dreams and a number of wake-ups, but sleep quality pretty decent. I can sleep either on my back or right side. I think my L shoulder bothers me too much to sleep on that side .
Sx: Herxing all tolerable, intermittent and transient.
Felt pretty decent for first 1.5 hrs, then started herxing again. All tolerable, but noticeable. Achy back around ribs and down into buttocks. Medium headache, fatigue/heaviness, soreness in front ribs & tips, prickly sensations throughout torso, arms and hands…later legs. Increased limb propensity to fall asleep. Increased dizziness upon standing. Stronger heartbeats as well. Oh, and have a lot of R eye twitching over the past three weeks.
6ish legs ache for a while
8ish – back ache milder, headache gone, more energy, but front rib tips and solar plexis & upper abdomen flare some.
1am – prickly hands and mildly prickly knees
Mental Energy: 85%. Feel like writing again, so that’s good – as long as I don’t have to move. I’m thinking more clearly these days, and for longer periods of time. Conceptual thinking is still at about 60-70%, but I know it’ll return.
Phys Energy: 65-70%
Mood: Very good!
Last edited on Thu Mar 2nd, 2006 22:36 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: Thu Mar 2nd, 2006 22:43 |
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Here's catch up #2. Again, sorry for all the black. Editing is not my current forte...actually used to be my specialty.
Tues, 2/28/06, Day 105 Beni, Day 90 Full MP,
20mg crushed Beni Q5.25H, 75mg mino QO3, cycle 6, day 1, 12noon
Sleep: Sleep by 1. Woke up 10:45. When awakened for 2nd Xyrem dose at 3:45, I couldn’t fall back asleep until about 5. I got up and took an extra 1/2 dose of the Xyrem. That’s never happened before – Xyrem always knocks me out for the 2nd dose. I was dreaming quite a bit re: a new and massive Social Security form I must now fill out. Apparently, their discovery of my “new” dx of CFIDS is causing all sorts of angst on their end.
Sx: Herxing was very tolerable, intermittent and transitory. Mainly torso related aches/pains, headache, ant-bites throughout limbs, rapid/stronger heartbeat, some heart area pain, and sudden slight dandruff. Kind of like a freakish, mild snowstorm.
Was still mildly herxing when I took my mino. Should have gone 4 days, but wasn’t thinking much before swallowing the capsule. We’ll see on the next cycle. I seem to do best on at least a QO3 cycle, but have also done QO2. I also generally have a strong intuition as to which cycle length is best on a particular dose or cycle, and thus far, it hasn’t steered me wrong. Rats, I probably just jinxed it! <knocking on a large piece of wood right now!>
Herxing eased for a couple of hours after I took the mino, then started up again. Makes me wonder if frequent dosing would work for me if I ever needed to try it. It did indeed slow the initial herx for a couple of hours, but then herx set in again. If I ever have a runaway herx <once again my knuckles rap wood>, I’ll try first with increasing Beni and discontinuing the abx. I also have something else I’ve tried for intolerable herxing that really works. Will post about it soon.
Mental Energy: 85% Can focus a little better at times. Finished reading a big book and actually remember a few things from it! Granted, it was no intellectual tome (that’ll take a while yet), but I could keep the characters semi straight and even remember their names when I looked away! A victory indeed, but I must also admit that I suddenly couldn’t recall which faucet side was hot or cold, or which direction to turn my light dimmer switches. Kept glasses on for everything after nearly blinding myself at one point!
Phys Energy: 80-85%
Mood: Good
Wed, 3/1/06, Day 106 Beni, Day 91 Full MP
75 mg mino, none_ cycle 6, day 2
Sleep: Sleep by 2:30, 1st dose Xyrem 1:30, 2nd dose 4:45. Woke up 9:30.
Sx: Overall need to stay horizontal most of the day. Not that I was weak, just felt best in that position. Overall herxing was stronger than Day 1 and pretty steady until going to bed. It’s best described as a general feeling of malaise with intermittent aches, pains, and tingles/pin pricks throughout the body. Oh, and periods of stronger/rapid heartbeats and 10 seconds of the loudest tinnitus I’ve ever had. Got very nauseated around midnight, but didn’t want to “lose” my Benicar, so held everything down. The joy of dry retching in bed is a tough one to beat,
Mental Energy: 85%
Phys Energy: 75%
Mood: Good all day. Cleared my tear ducts out watching some truly not so sad TV (blast these hormones!), but it’s all good.
I just read a story about the 12-year-old kid who stomped his 6-year-old playmate to death a number of years ago. He was sentenced to life, but that was changed to probation. Now, said teenager just robbed a pizza delivery man. My first thought of “this kid’s ruined,” was quickly bulldozed by a HUGE craving for pizza. How perverse is that? I’d have given almost anything for a hot, gigantic cheese and sausage/pepperoni ridden slice. And I’ve never even really LIKED pizza.
It was the bacteria talking, right? Right?
Last edited on Thu Mar 2nd, 2006 23:01 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: Fri Mar 3rd, 2006 22:38 |
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Thurs, 3/2/06, Day 107 Beni, Day 92 Full MP
20mg Beni crushed Q5.25H, 75 mg mino, none_cycle 6, day 3
Sleep: Sleep by 2:10. Woke up 9:45. Ended up sleeping pretty well, considering I was so nauseated when I went to bed. In a clearer state of mind this morning, I decided that I was obviously out of my penny-pinching mind last night. Next time I will throw up the Beni and whatever else wants to leave. Desperately holding back heaves to save a buck? Hello brain! What am I talking about…I have insurance, so I saved about 36 cents.
These past two weeks, I seem to get very hot at least once or twice a night and wake up sweating – hot, damp, but not dripping. It’s quite different from my other nightsweats, when I wake up dripping, but freezing. Now I have to remove all the covers for at least 1/2 hour before cooling down, then temp goes back to normal. Has anyone else experienced this? Would these be considered hot flashes?
Sx: Herxing was relatively mild upon waking, and nausea completely gone. Herxing kicked in more strongly around noon, and I maintained all day/evening low levels of herx, with stronger intermittent and transient bouts. Much of the herxing had a pulsating quality to it, if that makes sense to anyone. It was all tolerable.
Noon on: Aches, pains, and pangs in mid to upper back & neck, back shoulders, lower back into buttocks (self-massage helped). Some moments I felt that getting up would be too much, then a few minutes or 1/2 hour later, I could w/o thought. Lots of intermittent prickles all over body. Lots of intermittent chest (I think cardiac) herx – mild to medium, Lasted until bed.
3 - Good couple of hours of hard herxing beneath lower front ribs and sides, circling around to same area on back. Upper abdomen as well. Some transient hard stabs as well. Those were “whew!” moments.
Several short-lived, but loud tinnitus episodes – R ear.
6 - Started coughing when I inhaled in the shower, as if breathing chemicals. My throat phlegmed up for a few hours and felt on the verge of laryngitis. L ear got super itchy while showering as well – that’s a first, and the bottoms of my feet really prickled, especially the arches
11- Throat felt a little sore for 10 minutes, then it passed. Still couldn’t sing high notes (my test for throat probs), so something’s up there.
1:30am - Throat a little sore again, plus some medium mid back and chest (cardiac?) pain and slight headache.
*Cardiac herx? – I do get “skippy” beats every now and again, but the chest symptom is mainly intermittent pain, like my heart’s being squeezed or pinched. Not the sensation of being pinched, but the pain that would accompany a pinch.
Mental Energy: 85% (Caught up with my report!)
Phys Energy: 75-80%
Mood: Good!
Believe it or not, I don’t like to concentrate on my aches and pains nearly as much as my writing might indicate. I’m curious and want to record what’s going on and learn from it, and perhaps help others with the information. I’m also very careful and cautious with the MP and my “condition, ” so nothing gets out of hand (so far!). Although the MP and herxing are ever present, I do feel best when I occupy my mind and/or body with something else.
For example, I’ve recorded today’s aches/pains, and to many, my day must sound awful! However, I also brined and roasted a chicken, cleaned up my kitchen, bedroom, sent out emails, researched some topics I’m interested in, spoke on the phone, did a couple of logic problems, showered, read an “easy” book, and I’m sure a few other things. On top of that, at 7:30, I took a deep breath and drove to meet a friend for a drink and a bite to eat in a place I used to love and haven’t been to for well over a year. That was something I haven’t done since being on the MP, let alone since early last year! AND, I had a really nice time, in spite of the fact that when the conversation lulled, I could suddenly feel my sore throat, chest/back pain and body prickles.
So, just in case my writing has anyone mistakenly thinking I sit here all-suffering, ban that thought! I couldn’t do most of these things before I started the MP, except stare at a computer screen. Sure, some days/hours are tougher than others and there’ll still be those that lay me flat. That’s been my life for many years, but then, I wasn’t getting better. The bottom line, is that I’m improving on the MP, and happily, the palliative measures of keeping my brain/self occupied - in any way possible - have mainly sufficed for getting through the formerly painful years and now the herxes – so far. I’m not stupid though, and do have some painkillers ready and waiting to be used if necessary!
I just feel so fortunate and blessed to be here.
____________________
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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Aussie Barb
Member in Phase 3
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Posted: Fri Mar 3rd, 2006 22:52 |
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Thanks Alayne
see this definition of hot flash. Many Members including men, have been hot thru the night as part of the herxing / hormone fluctuations.
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D.
You can access it at http://autoimmunityresearch.org/hormones.pdf
and HERXHEIMER REACTION
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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