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Alayne
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Posted: Fri Mar 3rd, 2006 23:45 |
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Thank you muchly Barb! I guess I can now relate to what my mother's gone through for years, poor thing. These hot flashes are just so different from my typical night sweats when I wake up freezing and wet. Yes, hormones are aflutter and in flux. 
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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 Mar 4th, 2006 22:42 |
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Fri, 3/3/06, Day 108 Beni, Day 93 Full MP
20mg beni crushed Q5.25H, 75 mg mino, none_ cycle 6, day 4
Sleep: Sleep by 3:30. Woke up at 9:45.
Sx: Herxed all of day 4. Hmmm. It was relatively mild from waking up to about 2, then set in more deeply. Again, much of it was pulsating, as if a ray gun was pointed at my head or torso, releasing intermittent waves of yuck.
Constant low-level mid-upper back, neck, and head herxing, mixed with intermittent, but regular harder bouts. A number of times my head felt too heavy for my neck and standing at the counter for more than 5 minutes made my back extremely painful. Had some upper and later lower abdominal stuff, and all day intermittent chest pain and body pin pricks.
Evening, had stiff neck, back of head, and lower jaw. When I went to bed, my lower teeth and jaw were aching.
Turning into a run-on herx? Hmmm. Will wait a while longer tomorrow to see if it continues. Maybe it’s time to up the mino. This didn’t happen when I last extended my mino to 5 days for a break, but that was on 67.5mg.
Mental Energy: 85% Not too motivated, but got a few things done.
Phys Energy: 75-80%? This number is completely relative. I could compare my current state to my mountain and rock climbing days of 6+ years ago or to a couple of years ago or to my bed bound months of last year. If I were to compare it to the first, it’d be about 25-30%. To the middle, 70-90%. To last year, 150-200%. So I’m just taking the middle one for now.
Mood: Good with a couple of dips
Thinking back to my “in shape” years, I was sick most of the time then as well. Just somehow worked my way through clawing my way up rocks with fevers, puking my way up mountainsides, and one memorable snow camping trip when I lost the use of my hands and arms. As it’s been for all of us, the illnesses were just part of life. I always felt so at peace outdoors, no matter the aches and pains. But when I had my first “real” collapse six years ago, I completely lost interest in nature and each year thought about selling off my gear. A niggling hope combined with lack of seller's motivation held me back though. Since starting the MP, I’ve felt a rekindling of the old interest and even joy when I look at my old pictures. I just know that I am going to be carrying a 60 lb backpack up a mountain again. And it will be so much more wonderful than I could ever have imagined, because, for the first time, I won’t be sick. This knowledge makes every rotten herx worth it!
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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: Sun Mar 5th, 2006 20:54 |
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Sat, 3/4/06, Day 109 Beni, Day 94 Full MP
20mg crushed Beni Q5.25H, 75 mg mino_cycle 7, QO3-4, day 1 (11am)
Sleep: Sleep by 2. Woke up 9:30.
Wide awake for 4:30 meds and couldn’t fall back asleep for quite a while. No hot flashes! A number of job anxiety dreams – about a non-existent job I’d dreamed about the night before. Go figure.
Sx: When I woke up at 4:30, I had a strange new body odor and my feet felt freezing and somewhat painful (even with wool socks on). They’ve been much warmer for a while, so that was a surprise. As for the BO, I’d liken it to “Chinese sweet & sour something left out in the sun a tad too long.”  I lay there enveloped in this cloud, thankful to be alone. My hips and bum hurt just from the mattress pressure, but that passed within 10 minutes or so. Then my Morton’s neuroma herxed – very painful as usual (it had disappeared for a couple of weeks). It took me about 45 min to fall back asleep.
Waking up at 9:30, I was still herxing, but quite mildly. Just a couple of light back twinges, with some rather sore lower back muscles. Started getting stronger at 11 though, so decided to take the next 75mg dose. This was day 5 of herxing on the last cycle and I thought the mino might give me a little reprieve, at least for a few hours. And it did. The herxing lessened to very mild again until 3 or so, then picked up a bit. All tolerable and “better” than the past few days. Back, chest, the muscles between neck and shoulders, intermittent rapid/stronger heartbeats and all over prickles. L shoulder (formerly torn rotator cuff) has herxed for the past month and today was intermittently very sore.
Hands and feet getting easily cold again – had eased up weeks ago. Strangely, the fingers and toes aren’t physically as cold as they used to get, rather the sensation of cold is very strong. My toes burn a little from the cold sensation, and I’ve realized it’s a very light version of how they felt after I had mild frostbite as a teen. It took years for the nerves to heal “properly.”
Something else new: A strange fluttery sensation in the 4 inches below my sternum. It grew very strong, I touched it and felt a very strong and rapid pulse from what I assume is the thoracic artery? So strong, actually, that I could see pulse movement through two fleece tops. My heartbeat was rapid (it’s all the same beat), but didn’t have the hard strength that the artery had. It was very very weird. The fluttery feeling was intermittent throughout the day, and the strong arterial(?) episodes occurred twice in the evening for about 15 minutes each. Could someone please tell me if arteries herx like this? I do seem to have more cardiac involvement than I’d anticipated.
Mental Energy: 80%
Phys Energy: 70-75%
Mood: Good with some dips
I didn’t herx strongly at all on the first four 75mg cycles, so there’s either been some kind of build up, or it’s now capable of turning into runaway herx, or it’s time to up the dosage. I’ll see how I feel on this cycle of the same dose and decide what to do. This is a good time to learn! Do my thoughts on this sound relatively on target?
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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: Sun Mar 5th, 2006 21:40 |
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Alayne
re do arteries herx like this?
almost anything is possible. eg. see this topic Herx and Picc Lines..
to gain experience and check herx symptoms see this link. If you are concerned about any aspects do not hesitate to contact your Dr.
when symptoms increase it may be that you have hit a batch of bacteria.
Do not hesitate to use any of the meds adjustments as per the FAQ
My Herxheimer reaction is too strong. What should I do? ..
Check these options one at a time to assess and adjust your own situation.
The increase option comes only after you have checked all other options.
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
Member in Phase 3
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Posted: Tue Mar 7th, 2006 09:50 |
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Thank you Barb! I realized I was acidic that night and the "bad" herxing eased after I took some baking soda. However, I think I'll stay at 75mg for at least another dose or two. If I've hit a big batch of bacteria, I'm fine with taking the buggers out.
*I messed up my cycle #'s. This is actually #6, not 7.
Sun, 3/5/07, Day 110 Beni, Day 95 Full MP
20mg Beni crushed Q5.25H, 75 mg mino_cycle 6, day 2
Sleep: Sleep by 2. Woke up at 10! Slept better last night than in a while. Woke up for 4:30 meds and couldn’t fall back asleep for a while, as bum & hips were herxing again, but slept solidly until 10! No hot flashes or night sweats either and no alien body odor!
Sx: What a “nice” low herx morning and afternoon.
Just a very low level blah feeling all day without any major increases of herx until 5. Body prickles, some rapid heartbeats, but nothing like the thoracic herxing of last night. That still weirds me out; it was just so foreign. However, I should mention now that I tested my urine pH last night and it was acidic (5.5). See here for explanation. Took 1/2 tsp. baking soda in water and voila, the really bad stuff stopped! I’d forgotten to check my acidity during much of the other bad herxing, so I may have been acidic then as well. I’ve no idea why I forgot about it, since I’d been doing it so regularly. Then again, like I said the other day, I couldn’t remember which side of the faucet was hot or cold. Short-term memory, long-term memory – all fair game in this battle.
So, good until 5, then herx increased. Diaphragm and lower front rib pain, mid-upper back muscles, ribs & neck, a sudden whoosh of pressure up my neck and around my head and into sinuses. Just sitting, I could feel my pulse throughout my head and torso.
Eased up for a couple of hours, but I felt quite fatigued and had difficulty carrying a couple of light bags up the stairs. That eased within an hour, was able to go out for a light dinner, then got some pretty serious upper abdominal pains (those were new!) for a few of hours. I made sure to keep busy throughout them because they were actually kind of bad. They stopped a couple of hours before going to bed though.
Mental Energy: 75-80% Had to do quite a bit of writing work for a friend and found it more difficult this time around than usual. Creative juices were more than a tad dry.
Phys Energy: 70-65-80%
Mood: Good with a few tears, but they definitely weren’t from herxing. Sometimes it’s nice to have “normal” tears, even though the cause stinks!
Mon, 3/6/06, Day 111 Beni, Day 96 Full MP
75 mg mino_cycle 6, day 3
Sleep: Sleep by 3, 1st dose Xyrem 2:30, 2nd dose 5. Woke up 11! Slept pretty well, all things considered. Woke up a number of times, and each time my pinkies and sides of hands were numb.
However, the biggie was my new “Shake-Awake” vibrating alarm for my early morning meds wake-ups, so as not to disturb anyone else. I’d been planning this as a happy surprise for weeks and this was my first time to try it, as it’d just arrived. Well, I think the entire building shook, and here in California, that’s always cause for alarm. Not only is it far too strong, the vibration is LOUD. Plus, I couldn’t find the neatly hidden buttons in the dark (even though I’d practiced), so turning it off was a violent enterprise, akin, perhaps, to wrestling with a very strong, yet small creature. Falling back asleep was a bit difficult for both of us, with all that adrenaline pumping through our veins. No night sweats or flushes though!
Sx: Today was a lovely day, a stellar minimal herxing day. Boy, did I need that! Just some intermittent reminders that I have an immune system. A little cardiac herxing with more rapid beats and about three minutes of rather stabbing pains under the L breast. Some minor eye twitching and that’s about it! Wish my lips would go back to normal, but they’ve remained my very constantly dry and scaly companions.
Mental Energy: 85% Was pretty darned good today. I wrote some, researched some, watched much of “What the Bleep Do We Know” and could actually follow most of it!
Phys Energy: 80-85%
Mood: Was just stellar most of the day. I found myself singing lyrics to songs I’d learned a million years ago and were long forgotten. BF was a bit disturbed when I turned into a medley of old tunes and wouldn’t stop. Conversations turned into him saying something and me singing back the answers, using lyrics. For a few hours, I felt incredibly light and filled with happiness. I felt that I could accomplish just about anything I set my mind to. Even though that state “eased” later on, just having it made my day. It was such a wonderful space to be in and a space I figure I’ll be inhabiting more and more of as time goes on.
Note to self: Return “Shake-Awake” Alarm for full refund.
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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 Mar 10th, 2006 06:18 |
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Tues, 3/7/06, Day 112 Beni, Day 97 Full MP
Beni 20mg crushed Q5.25H, 75 mg mino_cycle 7, day 1 (noon)
Sleep: Sleep by 3:20, 1st dose Xyrem 3, 2nd dose 5:30. Woke up 11. Slept fairly well with decent non-disruptive dreams. Much less eventful without the scary vibrating alarm.
Sx: No apparent herxing when I woke up. Took the mino at noon. Felt just a tiniest flush of warmth within an hour and that was about it for the physical stuff, with perhaps a jab or stab here and there during the day. I did take my 2nd bath of the MP at 1:30. It was a lovely soak. I wanted to see if it’d make a difference in the herxing.
The main herxing was brain related. I became rather claustrophobic in the late afternoon and couldn’t stand much stimulation at all. Would have preferred being able to shut myself away, but couldn’t. Got angry a few times as well, but was provoked, so don’t really know how much was herxing or a normal reaction.
Mental Energy: 75-80%
Phys Energy: 75-80%
Mood: Varied. Okay, claustrophobic, angry, sad
Wed, 3/8/06, Day 113 Beni, Day 98 Full MP
75 mg mino_cycle 7, day 2
Sleep: Sleep by 2:45. Woke up 10:15. Woke up because too hot, but realized in the morning that the heat had been left on – so no hot flash, just a higher gas bill.
Sx: Started period this morning and cramps were very manageable and even better than the last one (and the last one I said was better than most)! I do take progesterone 16 days/cycle and will keep on it for a while longer. Then plan to slowly taper down and eventually see how my cycles fare on their own. Since starting the MP, most of my other hormones have gone into the low normal range, and I’m assuming the MP will take of my last two low ones. I stopped supplementing the testosterone in December, although it still barely registers. I seem to do okay without it. (I’ve read all the information about hormone replacement on this site.)
Had low-level tinnitus much of the day, with a couple of short-lived louder sessions. Lots of R eye twitching. Some lower back and abdominal pain, but I’ll attribute them to the period. A little sleepy, a little on edge, and a little anxious – ditto for the attribution.
Late afternoon - some cardiac pain (or center chest pain – whatever it is) and at one point, put my hands on my upper abdomen and felt an extremely strong pulsing of the thoracic artery. It lasted less than a minute and stoped as quickly as it started.
Increased heart rate, could feel it pumping throughout my body at times. Could even feel my pulse in my face and nose. This was all transient, however. Overall desire to remain more seated than standing.
Some front rib pain/pangs and kind of fluish feeling for a couple of hours. Really truly annoying lower back ache that I attributed to my period, but honestly, it varied during the day like a herx.
Mental Energy: 75-80% A little lower today. Not very motivated.
Phys Energy: 75%
Mood: Okay, with some moodiness and anxiety. Needed to stay quiet and felt rather sad at times.
Thurs, 3/9/06, Day 114 Beni, Day 99 Full MP
75mg mino_cycle 7, day 3
Sleep: Sleep by 2:15, 1st dose Xyrem 1:30, 2nd dose 4:10. Woke up 9:20. Normal sleep, woke up because too hot, dreams I can’t remember.
Sx: Whole body herx, but mild. Felt mildly fluish at times, some rapid heartbeats, pangs and stabs here and there, pricklies all over. All fairly consistent, but mild.
Mental Energy: 75-80%
Phys Energy: 70-75%
Mood: Okay, with some challenges.
Went grocery shopping and again realized that I react much more quickly and strongly to fluorescent lighting than sunlight. Wore hat over eyes and snow glasses that are between the 2% & 10% NoIRs. Also realized that I get a kind of sore and scratchy throat when exposed to fluorescent lights – and headlights. I’d been trying to tie my intermittently scratchy throat together with something, and there it was. Does anyone else get a scratchy throat with fluorescent lighting? Does anyone else have a stronger aversion to fluorescents than sunlight?
Have I mentioned that I've gained about 13 lbs since Dec?! I'm up to 126 now, so it seems I'm absorbing nutrition much better. For those who don't know, I'm 5'10" and had dropped to 113 lbs, although eating a lot. I've another 10 lbs to go, but figure it'll come in time. In the meantime, I still have only one pair of pants I can wear...a mixed blessing, I suppose. I mean I never have to think about what to wear ...but there are times I'd really like to be able to think about what to wear. Last edited on Fri Mar 10th, 2006 09:10 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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Aussie Barb
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Posted: Fri Mar 10th, 2006 06:31 |
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Hi Alayne
see this post re fluorescent lights.
and this FAQ I'm losing weight. What should I do?
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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sunflower
Guests visiting Phase 1/2/3
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Posted: Fri Mar 10th, 2006 12:26 |
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hi again alayne,
in response to your question about flourescents, i have had a stronger reaction to them than sunlight; my reaction has been an occasional fainty feeling, like i get after taking a hot shower. when i have been exposed to much sunlight (driving to my brother's house 2 hrs away, and being at their house) i have taken benicar q4h to alleviate any potential problems. this could be why i've not had much/any reaction.
i have to admit, also, that while shopping, etc., in stores with flourescents, i take my glasses on and off to be able to read labels and see things more clearly; i have to wear reading glasses, and my bolles won't accomodate them. so, this could be the reason for the dizziness .
i actually wish i had more photosensitivity, so that i wouldn't be as tempted to play fast and loose with my sunglasses indoors. i can watch tv without anything and it doesn't seem to bother me much at all (not that i do it very often, ).
p.s. i'll give you ten of my pounds and then i would only need to lose 30 more! see ya tootsie...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: Sat Mar 11th, 2006 20:41 |
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Thanks Barb! I’m proud to say that I’ve actually read those two links a few times! I stopped worrying about my weight because of this information. I had weight loss problems before starting the MP, so this is an obvious improvement in my symptoms!
Sun, as you’ll see here, my belief of being more reactive to fluorescent lighting was thoroughly debunked. And how will you be sending those 10 lbs? Please hurry so I can wear my clothes!
Fri, 3/10/06, Day 115 Beni, Day 100 Full MP
Beni 20mg crushed Q4-5.25H (extra Beni today), 75 mg mino_cycle 8, day 1 (noon)
Sleep: Sleep by 2:50, 1st Xyrem 2:15, 2nd dose 4:45. Woke up 10:15. Decent sleep. I put in earplugs now when I wake up for 2nd meds dose and sleep better through the outside noises. Even with Xyrem, once I wake up, it’s extremely difficult to fall back asleep.
Sx: Nothing much happening, so I took the mino at noon. Felt pretty perky for the first few hours, with little herxing. Just some varied and transient pangs and stabs here and there (ribs, under L breastbone, upper ab). A few short-lived and mild tinnitus sessions, intermittent rapid heartbeat. All mild and extremely tolerable.
And now, Alayne’s testament to how well K-cream works and the necessity of taking additional Benicar BEFORE heading into daylight, not just afterwards.
I had to go to the post office and it’s no longer dark until after 6.  At the last minute, I remembered that my post office closes at 5, not 5:30, so I hurriedly got ready and shot out the door with my packages at 4:45. Wore a hat, my 2%’s, gloves, heavy coat, etc. – BUT, didn’t put on K-cream for the first time. Until now, I’ve not gone out in daylight except for dr’s appointments and the one time I worked. I’ve always worn K-cream.
At least it was cloudy. Drive took 14 minutes, stood in line for 10 min next to some big windows (turned back to them), and drive home took 20 min. All that was exposed was the lower part of my face, yet, I already started to feel the exposure effects on the way home. In my chest. My chest began to feel very heavy and tight, heart rate went up, sharp pain set in. By the time I got home, I was pretty amazed at how quickly the symptoms were increasing in strength – scarily so. They also felt different from any herxing I’ve had. (I’ve read that folks with cardiac involvement must be very careful of 1,25-D surges, and this was quite adequate as proof.)
I immediately took a crushed Benicar with very warm water and for the first time on the MP, distinctly felt its palliative effect. I take it consistently, but until now, my symptoms have never been noticeably relieved by additional Beni, although I do increase it to Q4H on daytime trips. Nor have I felt much, if any difference, when taking it, as many others here do. But this palliative effect was very obvious. The chest pain, tightness, and rapid beats started easing with 10 minutes and were gone within 1/2 hour.
And here I thought I react more strongly to fluorescent lighting than sunlight. So not true without K-cream. I’ll take the buzzing head and burning eyes of fluorescents exposure any day over such increased cardiac symptoms.
Everything was fine for rest of evening, with the former mild and transient herxing resumed.
Mental Energy: 80%
Phys Energy: 75-80% Legs were sore from carrying bags up stairs the night before. It’s still strange to me how carrying a few bags is a real workout. Then I remember when I couldn’t even walk 10 feet on my own, so am pretty darned thrilled that I can usually carry my own groceries now!
Mood: Pretty good all day, easy tears when watching TV in evening, but what’s new?
Last edited on Sat Mar 11th, 2006 20:44 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: Mon Mar 13th, 2006 19:18 |
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Sat, 3/11/06, Day 116 Beni, Day 101 Full MP
Beni 20mg crushed Q5.25H, 75mg mino_cycle 8, day 2
Sleep: Sleep by 2:20, 1st dose Xyrem 11:38, 2nd dose supposed to be 4:15, but slept through alarm, so it was 5:50 when I woke up on own. That made Beni 1.5 hrs late as well. Argh! Slept again from 6:40-11.
Sx: Woke up with headache and chest pain. This was my worst headache yet on the MP (migraines stopped with sun & D avoidance), but tolerable. Mid-upper back and neck somewhat crackly (haven’t had that in a few weeks). Upper abdominal pains as well. Some rapid heartbeats and skips, heavy chest. Could feel my thoracic artery beating again.
Raynaud’s Phenomenon middle left finger – 1st in a couple of weeks. Was holding a smoothie with that hand, so set it off.
Felt pretty consistently lousy until about 7:30, then everything eased some.
Perhaps today’s “herxing” was still partially due to yesterday’s light exposure. It felt different from my typical herxing, especially with the headache, the heavy chest and an overall “weird” feeling. I know I was 1.5 hrs late with my early a.m. Beni, but that’s never bothered me before.
Mental Energy: 75-80%
Phys Energy: 70-75%
Mood: Okay, with some low-level anxiety.
I got very restless and left the house at 7:30 to wander around my favorite Thai store I hadn’t been to for over a year. This store sells all things Asian, from Thailand, Indonesia, Korea, China, Japan, you name it. I was happily able to find some good spices, sauces, curries, and other things without fish, D, or MSG! Am in need for a little diet variation. The cool part of this is that I haven’t had the oomph or motivation to go to the store for about a year. Grocery shopping yes (when I could walk again), because I HAVE to to survive. But the thought of going to a food store for “fun,” was too overwhelming - until now! These are such small steps, but so significant to me.
Sun, 3/12/06, Day 117 Beni, Day 102 Full MP
75 mg mino_cycle 8, day 3
Sleep: Sleep by 3:15, 1st dose Xyrem 2:30, 2nd dose 5. Woke up 11. Pretty decent sleep with nothing of note happening…which makes it more than decent!
Sx: Nothing much on getting up, just a slight headache. Herxing stayed away until about 4:30, then kicked a bit with the familiar mid back through to chest stuff and some rapid heartbeat and a couple of heart skips. 7:30ish, upper abdomen stabs and behind lower ribs aches. Prickles in hands and arms. Tinnitus in R ear. All in all, extremely tolerable and far less than yesterday.
Mental Energy: 80%
Phys Energy: 75%
Mood: Fine, although I notice that emotions are close to the surface. Easy to cry at times, that’s for sure. I managed to help someone today and the relief I felt at being somewhat useful made me tear up. Imagine me going back to teach these days – I’d be sobbing in a corner after helping students, traumatizing the entire class into never asking for help again, subsequently ruining their academic lives. Yes, it’s definitely best I stay home for now.
Cleaned some around kitchen and b-room, and roasted a chicken, but still didn’t do the paperwork I’m behind on. Or a number of other things that are hanging over my head like a cloud of doom. Oh motivation, where art thou? Rats! On a better note, I managed to do a logic problem slightly harder than a #2! That’s a first since starting the MP. I’ll know I’m cured when I’m back in the #4’s.
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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 Mar 15th, 2006 19:11 |
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Mon, 3/13/06, Day 118 Beni, Day 103 Full MP
Benicar 20mg crushed Q5.25H, 75 mg mino_cycle 9, day 1 (noon)
Sleep: Sleep by 3:30, 1st dose Xyrem 3, 2nd dose 5:30. Woke up 10:15. Wish I could’ve slept longer, but no go. I’ve realized that I’m sleeping more “normally” these days, even though I still have to take a very heavy duty drug to fall/stay asleep. I used to write quite a bit about dreaming and wake-ups, but haven’t done that much for over a month now. The vivid dreaming has eased, and the many wake-ups are greatly reduced!
Sx: None to speak of, other than the dry mouth I’ve forgotten to mention the past week. That’s back in the mornings. Salivary glands have been somewhat swollen as well.
Argh, anxiety is back. I haven’t had this since the beginning of the MP. Hate it hate it hate it. Increased eart rate along with that doomed feeling, or that I’ve done something horribly wrong feeling, or I’m going to get into big trouble feeling.
Mental Energy: 80% with little motivation
Phys Energy: 75%
Mood: Okay with anxiety and some intolerance (lack of patience)
Tues, 3/14/06, Day 119 Beni, Day 104 Full MP, 75 mg mino_cycle 9, day 2
Sleep: Sleep by 2, 1st dose Xyrem 1:30, 2nd dose 4:15. Woke up 10:20. Very very nice sleep! No remembered wake-ups except for meds. Haven’t had any night sweats or heat flushes for a while as well!
Sx: Herxing very mild upon awakening. Backache (muscle and bone) was main symptom. Around 1, sinuses started to burn a bit (new), but not run. Head grew heavy, along with the familiar cotton-stuffed feeling, along with slight headache. Mid-upper back and neck herx intensified some.
All herxing intermittent and very mild through rest of day.
Then around 10 I got one of my weirdest herxes yet. It continued on and off until bed and I stayed seated pretty much throughout.
Sinuses started burning again, but more intensely than earlier. Headache, neck and shoulders kicked in. Nose turned a little stuffy – since starting the MP it’s been really clear. Smelled ammonia a number of times when inhaling through nose (none around, of course).
Hard to describe: Episodes of a strange fuzzing of the edges, like waves of unsteadiness through my head and behind the eyes. Some black on the edges of my vision. Also a pressure inside my head, with waves of greater pressure and unsteadiness.
Salivary glands turned somewhat sore.
A number of times, when I looked at something and moved my eyes away, there was a delayed image trail that followed.
First spots in vision – disappeared very quickly.
Wow, if I weren’t on the MP, I’d probably have thought I was having a stroke of some sort. This herx was just so strange. The different effects of die-off in the brain are rather fascinating at times – as long as they don’t stick around too long!
Mental Energy: 80%
Phys Energy: 75-80%
Mood: Good. Anxiety a tad less than the past two days, but still a bit of a pain in the butt.
And some good news - my parents, with whom I speak and write to often, have noticed some big improvement. I quote them entirely without their permission here:
Dad: “We've noticed a significant improvement in memory, mental processing (ability and speed), reading comprehension, articulation, spelling, grammar, etc. I'm sure you're as pleased as we are with this progress.”
Mom: “We’ve heard and seen such a wonderful difference in your voice and e-mail writing… It has been a huge relief for us to hear you speaking and writing more like your old self again." (Granted, they've not seen my rambling posts here, so their judgement may be a little skewed. )
Then they asked me to contact an acquaintance of theirs who has CFS and tell him about the MP. What a good feeling. 
____________________
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 Mar 17th, 2006 19:03 |
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Wed, 3/15/06, Day 120 Beni, Day 105 Full MP
Benicar 20mg crushed Q5.25H, 75 mg mino_cycle 9, day 3
Sleep: Sleep by 1, 1st dose Xyrem 12:30, 2nd dose 3:30. Woke up 9:20. I wasn’t doing anything remotely productive last night, so decided to go to bed sooner and see if I could accomplish more the next morning. Since I don’t fall asleep on my own – AT ALL – I can actually schedule my sleep with the Xyrem.
Sx: Very light herxing…some cottony head, slightly swollen salivary glands.
1 – Diaphragm and behind sternum through to mid back pain. Front ribs as well.
2 – Started all over body herx, which intensified around 3 and suddenly made me want to throw things around in frustration. There are times/moments now that I get so tired of herxing or being sick! Like so many other here, I was just used to feeling like cr@p all the time and accepted it as the norm. Now, because I have windows here and there when I feel “good,” there are times I feel more than a little impatient with feeling lousy. It’s like I don’t want to accept it anymore because I know it’s not a way of life any longer, but something I can fight.
It took a few hours, but the full body herx eased up and I ended up having a very nice evening.
Mental Energy: 80%
Phys Energy: 80%
Mood: Good
Thurs, 3/16/06, Day 121 Beni, Day 106 Full MP,
Benicar 20mg crushed Q2-2.5H, 75 mg mino_cycle 9, day 4 (extended because of 8:15-3:30 outing)
Sleep: Sleep by 12:15, 1st Xyrem dose 11:45, 2nd 2:15. Woke up 7. Slept okay, except had forgotten my 2nd Xyrem dose in the kitchen and had to first figure out what I was looking for, then find it in the dark. Had to get up early for dentist and dr appts.
Sx: Not much noticeable when I got up, except heavy legs. Took Beni before heading out into the “only sunny day of this week in LA’ (naturally ). Then took 20mg Beni every 2 hrs afterwards. At least I didn’t have to drive. Dentist was 1 hr drive (traffic). It was the first time I’ve been since starting the MP. I meant to bring an eye mask, but forgot, so tried using the 10%’s and 2%’s together for the light – COULDN’T HANDLE it at all. Hygienist turned that switch and I jerked like I’d been electrocuted. We ended up putting a bean bag neck cushion over my eyes, which blocked light very well, although the thought of so many people’s nervous necks indirectly touching my face was a little disconcerting.
Then to MP doctor, which went very well. He was very interested in what I could explain of the “Microscope” Discussion and plans to take a look. I also mentioned potentially doing a Bowen Lab test for Lyme. He said he didn’t really know what to think of it, because every single patient he’s had tested there, has been positive – even when they weren’t exhibiting classic Lyme symptoms, maybe just some fatigue. He is leery that the lab has apparently never had a negative. I did tell him that MP folks who do the Bowen test over time have increasingly lowered titres, which is probably indicative that the test is legitimate (and the MP's working, for that matter!). He listened, and when asked what percentage of folks he thinks could have CWD, admitted that number could possibly be much higher than most could ever now psychologically fathom. It’d be too overwhelming. Nice point.
1:45, stopped at mall on way home to get a summer hat. Haven’t been to a mall in at least three years. At least it was indoors, but kept covered up for some very high and indirect skylights. Wanted to burst into tears and throw myself into a wheelchair by the time the elevator door opened. But pushed myself to walk to the other side where the hat store is, because I knew I’d not be coming back for a long time. Anyhow, all the hats were still wool , which made me want to lie down right there and black out, but then BF needed to get something to eat and offered to carry me piggyback. The image of being carried through the mall on his bad back gave me enough energy to hobble to the food court. I just sat there drooling, too tired to even eat more than a few bites. Don’t remember walking back to the car, but was home by 3:30 and immediately lay down. Could only nap for about 10 minutes, but just lying down was fantastic. If only it were okay to be pushed around on stretchers when necessary, life would be grand.
I continued to take Beni Q2-2.5H until going to bed. Although I was incredibly fatigued, I didn’t have the cardiac effects of the other day when I was out for 1/2 hour w/out K-cream!
Mental Energy: 75-80%
Phys Energy: 70-60-65%
Mood: Very good and even-keeled for the most part.
Note: I’ve mentioned my lousy dental woes before (15 root canals, jaw infections, etc.). I floss daily, use a Sonicare toothbrush, massage my gums, blah blah blah. So it really bugs me to get my teeth cleaned and still have inflammation in areas, even though I know the cause and that this too will get better. I guess I’m also annoyed because the dentist (a new one) didn’t believe my explanation of CWD and such. Just did that, “Uh huh, riiiiiight…” and quickly averted her eyes. Then very brightly said I should come in every month. I asked if that’d be free, and she just smiled. Uh huh, riiight. Won’t be doing that, but I’m betting she’ll be more of a believer down the road as my dental stuff start to clear up – without her monthly interventions.
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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 Mar 22nd, 2006 06:38 |
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Fri, 3/17/06, Day 122 Beni, Day 107 Full MP
Benicar 20mg crushed Q5.25H, 75 mg mino_cycle 10, day 1
Sleep: Sleep by 1, 1st dose Xyrem 12:30, 2nd dose 3:15. Woke up 7 (forgot to turn off yesterday’s alarm . Was able to doze off and on until 9:15. Find I really just cannot bear much noise at all from about 6 on, and forgot to put my earplugs in. I used to be able to sleep through fire trucks and ambulances. Could sleep with open windows in Manhattan.
Sx: Not much. Legs still quite tired and sore from yesterday, but better. A few twinges in upper abdomen when I woke up, tired arms and shoulders. It’s hard to say what’s from yesterday’s outing versus herx, so I’ll just go with a little exertional malaise for fun.
Lethargy was my main nemesis today. Or rather, fatigue. However, when I think about it, today’s fatigue is nothing compared to my fatigue prior to the MP when I often couldn’t do anything. I was tired and heavy today, but still managed to cook a couple of meals, scrub the kitchen sink, fill out a little paperwork, and in the evening, be persuaded to go out for a tea (granted, that took A LOT of persuading).
Before, when I thought a day was shot, was when I lay on the couch or in bed all day. Now? The ante’s upping. I may be getting harder on myself than I need to be, but can’t seem to help it. I’m just finally, for the first time in my life, at this moment, totally sick and tired of being sick and tired. The years before the MP, I couldn’t even think in that direction, or I’d have crumbled. I had to deny how ill I really was, to myself, to others, or I’d have never made it through the years of work. When I was finally Dx’d with CFIDS/FM, I was finally able to talk about my health, only to hear others say, “Of course you’ve always been sick, you just always said you were getting better.” And I always honestly thought I would, because the alternative was too impossible to fathom. I was so patient over the deteriorating years. But now, on the MP, really knowing I will get better and having sensed some improvement already - I’m feeling an impatience I’m entirely unfamiliar with. Starting to feel guilty for not accomplishing more…for not being able to do more already. Knowing that I have to start working again, at least part-time, by the end of the summer is not helping either.
This improvement and becoming less accepting of my disability levels is interesting. I’m sure the impatience will die down some, that this is a phase probably most people go through. I hope.
11:30pm – Some deep inner ear stabs. I haven’t had too much ear involvement, with only a few stabs and some generally mild tinnitus episodes and twinges until now. (My father’s totally deaf from Menniere’s Syndrome, which is apparently also a Th1 Disease,)
Hoping this is my last 75mg mino cycle, but we’ll see.
Mental Energy: 80%
Phys Energy: 65-70%
Mood: Okay, with sadness
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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 Mar 22nd, 2006 06:48 |
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Sat, 3/18/06, Day 123 Beni, Day 108 Full MP
Benicar 20mg crushed Q5.25H, 75 mg mino_cycle 10, day 2
Sleep: Sleep by 1:20, 1st dose Xyrem 12:30, 2nd dose 3:15. Woke up 9. Didn’t seem to sleep too deeply, as I woke up to some minor street noise at 2:45, then tossed and turned for most of the night. For some reason I had to keep changing positions. Also realized that my Morton’s neuroma flares quite often during the night, I’m just not always aware of it. The past few nights I’ve awakened for my meds and noticed the neuroma burning. It’s not nearly as bad as the BIG neuroma herxes though, which had me almost yelling.
Sx: Tired. Tired. Tired. And very heavy. Had some brain power upon getting up, but it rather quickly deteriorated. I kept writing posts that I realized made little sense, so couldn’t post them…or fix them. Then my back and bum started getting quite sore, my bum cramped so much that I couldn’t sit down for a while – even though I was so tired. Finally I went to lie down and fell into a fractured two-hour sleep filled with strange and clandestine dreams about the MP (seriously) and many wake-ups.
I’ve become very sound sensitive/reactive again in the past few days. My ears just don’t seem to be able to filter out extraneous sound right now, so the startle effect is back to some degree. The fact that I’m hearing/reacting so much even under the influence of Xyrem at night, indicates a high level of reaction.
Other sx’s: Runny nose, burning sinuses, some sneezing, mild headache – intermittent.
Some sensitivity in upper right cuspid root (had rapid extrusion 7 years ago)
Mental Energy: 75-60% Cognitively, I went flat.
Phys Energy: 65-70%
Mood: Fine
Sun, 3/19/06, Day 124 Beni, Day 109 Full MP, 75 mg mino_cycle 10, day 3
Sleep: Sleep by 1, 1st dose Xyrem 12:40, 2nd dose 3:30. Woke up 7, got up 8:30. Fell asleep more quickly than usual, but then had many wake-ups during the night. Kept tossing and turning and think I get uncomfortable in any one positionsafter a little time. Kept hearing little noises, so obviously didn’t get much deep stage sleep. Tired when I finally got up.
Sx: Body lighter than yesterday, and less fatigued, so that was good. Felt like I had a cold starting most of the day (something I also never get), but figure it’s herx, since the syptoms wax and wane. Still had difficult time concentrating on anything for more than a few minutes at a time.
Mental Energy: 70-80%, depending on the minute. Obvious decrease in focus ability, as well as conceptual thinking. Motivation almost 99% out the window.
Phys Energy: 70-75%
Mood: Fine…a little blah
____________________
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 Mar 22nd, 2006 06:55 |
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Mon, 3/20/06, Day 125 Beni, Day 110 Full MP
Benicar 20mg crushed Q5.25H, 75mg mino_cycle 11, day 1 (11:30am)
Sleep: Sleep by 1:15, 1st dose Xyrem 12:38, 2nd dose 3:15. Woke up 8:55. Slept better, with not as many big wake-ups. Know I tossed and turned because I’d wake up, but only briefly. Was wide-awake for a while at 6am, but was happily able to doze back off.
Sx: Not much noticeable when I got up, which was nice as well. Around noon, just a smidge, but barely noticeable, so I decided to take another mino, even though doing taxes today – living on the edge! When I went to find my 25mg cap to add to my 50mg, it wasn’t there. I then realized I’d somehow mixed it up with my Benicar (crushed in same size cap) and had taken it about 24 hrs after the 75mg mino dose. That solves the mystery of the extra Benicar I thought I’d had in my container. With the lighting so low, I didn’t notice the yellowish color to it.
This could explain my additional or new brain-related herxing of the last cycle. Duh. Maybe I should have waited until tomorrow before taking this dose. Too late though. 75mg seems to be my nemesis dose thus far. I’ve been on it for over a month now and the herxes just keep on changing. Was feeling more than a little impatient with it, but am now resigned.
Herxing started within an hour. Just that slightly fluish feeling, heavier head, hot eyes, sore mid-upper back and neck, neck. Very tolerable.
1:15 - Anxiety set in with rapid heart rate, but died down. The rest of day was just intermittent typical low level herxing.
Mental Energy: 75-80% Much improved and was able to deal with numbers and such for taxes today!
Phys Energy: 75%
Mood: Good!
Tues, 3/21/06, Day 126 Beni, Day 111 Full MP, 75mg mino_cycle 11, day 2
Sleep: Sleep by 2, 1st dose Xyrem 1:40, 2nd dose 3:45 (supposed to be 4:15). Got up 7:50. Actually woke up at 3:45 because of Morton’s neuroma flare. Decided to take my meds early and thankfully was able to fall back asleep. Started waking up again around 6 though and dozed until 7:50.
Sx: Herxing was typical fluish feeling, more concentrated in head and neck. Mildly runny nose and a little sinus burning. Typed a few posts and by noon, herxing was more intense and concentration shot. By 2, I was just too tired and herxy to stay up, so lay down and slept on and off for a couple of hours. Woke up to upper and lower jaw/teeth aching (minor), and medium chest, ribs, back pain. Plus the odd sensation of pressurized and moving air in my chest (not in lungs). Rather impossible to describe, I suppose. Oh, and intermittent increased heart rate and stronger beats.
5:30- Pretty good neck and headache. Chest and ribs never stopped, but stayed very tolerable.
Mental Energy: a.m. 80%, early-mid pm 65% (no focus), evening 75%
Phys Energy: 75%-65%-75%
Mood: Okay with some lowered patience.
P.S. My big recent bout of impatience dwindled markedly. Wonder if there was a bit of unnecessary self pity involved? Hmmm.
____________________
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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barbski
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Posted: Wed Mar 22nd, 2006 11:10 |
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Hi Alayne,
Just thought I'd sympathise with two things - the minocycline dosing SNAFU (welcome to my world!) and the trouble with 75mgs.
I know that I had other problems - colds, dental trouble that made it even more difficult, but I found 75mg really tough, especially at my first attempt. For me, drawing back and starting again worked a treat, even though I did it unintentionally... If it's any consolation, I've found 100mg much kinder so far - in fact, if I had my Ph2 meds I'd be considering moving on after only 10 days.
Hope you beat the 75mg herx soon
Best wishes,
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
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Alayne
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Posted: Fri Mar 24th, 2006 23:59 |
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Wed, 3/22/06, Day 127 Beni, Day 112 Full MP
Benicar 20mg crushed Q5.25H, 75mg mino_cycle 11, day 3
Sleep: Sleep by 1, 1st Xyrem dose 12:30, 2nd dose 3:30. Got up 8:15. Tossed and turned again starting around 5:30. Either I need to think about changing my sleep med, or just have to ride out this latest sleep change. I guess in the long scheme of things, I’m still getting a few hours of uninterrupted sleep – as far as I can tell.
Sx: None upon getting up. Then a little chest/cardiac. Within the hour, mild “cold” symptoms returned, as well as headache. Mid-upper back and neck herx.
Upper teeth (at the roots) ached for a while, but it was very tolerable. Throat a little sore and mouth & throat dry, no matter how much I drank.
Felt need to remain more horizontal today. Initially wasn’t feeling horrible or anything like that, but had great need to lie down with computer on lap. Within an hour or so of that, I went to sleep and dozed off and on for 3 hours. Woke up feeling like a train had whacked me and that lasted until bedtime, with even lower dips in between. No pain herxing, just really felt like I had a cold and flu and something had sucked me dry. Was able to make dinner, although had no appetite and couldn’t eat. Is it starve a cold…? Just kidding, I think this is herx, but then again, perhaps my immune system’s kicking in well enough to allow a dratted cold.
It was a little startling to see my face in the mirror and realize I can actually look worse. Wow, I thought I looked under the weather before…
Mental Energy: 65-70% Still unable to focus for any good length of time.
Phys Energy: 65% Folded some clothes and arms felt like I was lifting heavy weights.
Mood: Okay with some sensitivity and a few tears.
Thurs, 3/23/06, Day 128 Beni, Day 113 Full MP, 75mg mino_cycle 11, day 4
Sleep: Sleep by 12:45ish. Woke up 3:45 with Morton’s neuroma flare, and eventually slept in a semi-conscious state until 10, with a zillion wake-ups. Decided to try Tylenol PM last night, since the Xyrem’s been a little hinky for the past while, or rather, sleep has. I’ve used T. PM in the past, but it always gave me a hangover. Took 1.5 tabs, felt a little sleepy in 1.5 hours, but couldn’t fall asleep. So took a tiny bit of Xyrem (didn’t want to stop breathing!) and that helped me fall asleep…for about 3 hours, then it was up and down and back and forth. I finally got up feeling stoned and fluish. Am going to try Lorazepam tomorrow night. Oh to sleep through one night…just one night.
Sx: No typical herx symptoms, but I didn’t take any mino because I felt like complete crap. Cold and flu symptoms without fever or aches, plus the feeling that any life force I may have had, had been sucked right out. Stayed horizontal until 6:30, when I started feeling a little more human and sat up. By 7:30, I’d decided to go grocery shopping and by 8, felt weak from shopping, but alive again. Got a bit of appetite back too! Oh, found some potato chips cooked in peanut oil – bought them immediately, feeling no guilt whatsoever about glycemic this or that. Sometimes, a little comfort is welcome, as long as it has no D.
Mental Energy: 75%
Phys Energy: 60-70%
Mood: Okay. Then sad and really wanted my mommy. Then okay again.
____________________
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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Vicki SA
Member in Phase 3
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Posted: Sat Mar 25th, 2006 23:04 |
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Alayne,
I really feel for you. I hope your sleep and symptoms improve soon. Don't be afraid to drop back to 50mg Mino for a couple of days. What's a couple of days in all these years of illness!
Have you seen JRFoutin's MP Tool Kit re herxing? Tools to check: (Sorry I can't point you to the Link but Aussie Barb probably can.) I thought the advice to treat all symptoms (including emotional) as herxing was very valid. You have to live and cope with all symptoms, so look after yourself!
We are in this together. Best wishes, Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Alayne
Member in Phase 3
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Posted: Mon Mar 27th, 2006 17:00 |
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Barb(ski), thanks so much for the 75mg nemesis back up! It’s been a rather strange and bumpy ride. I know you went through all sorts of unexpected difficulties and were still coming through strong – remembering that helped me get through this last patch. Someone else’s difficulties make it easier to get through one’s own at times, sad as that sounds. I think I’ve hurdled the worst of it now!
Vicki, thanks so much for the good thoughts! You know, I didn’t really consider falling back to 50 this last time because extending mino doses helps me the most (as far as I’ve experienced in my limited time here.) I extended the dose to 5 days and everything eased up. To be honest, I don’t really care if I actually had a cold/flu on top of everything, or it was additional herx. Nothing major to prove here. I figure everything should be treated about the same - rest, extension of the mino, (sometimes more Benicar, although that usually doesn't work for me except for sun exposure) and pots of hot tea - decaf.
That said, I’ve wondered why I didn’t try the 50mg earlier and think it’s because the herxing changed so much during this 75mg month, I kept thinking something would give. (Yeah, 75mg gave and gave.) Like pretty much everyone else here, I also know that bullying my way through aches and pains is what I’m accustomed to. No matter how many times I look at my printed and updated info, there are times I just barrel through, especially if the old brain’s fuzzy. Will have to work on that.
Here's to learning and better herxing! -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: Mon Mar 27th, 2006 17:02 |
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Fri, 3/24/06, Day 129 Beni, Day 114 Full MP
Benicar 20mg crushed Q5.25H, 75mg mino_cycle 11, day 5
Sleep: Slept from about 1am-3pm. Took 1.5mg Lorezepam at 11, finally turned somewhat sleepy, but couldn’t fall asleep. Took a tiny bit of Xyrem to put me to sleep. Well, it worked all right – had to be dragged out of bed at 3. Still groggy and a little “high” at 5. Alrighty then, I think I’ll go back to pure Xyrem tonight and see what happens. It’s not that I woke up feeling really rested, but that could be due to the fact that it takes forever for meds to leave my system (always has). The nice thing about Xyrem is its very short 1/2 life. All other meds stick with me and I’ve normally had to take less than the prescribed doses. This may also be why I’m best with mino QO3-4, instead of QO2, as I’m generally herxing the additional days as well. Must say that I had pleasant and interesting dreams much of the night and don’t remember many wake-ups at all!
Sx: Tired, but better than the past three days. No noticeable herx pains, and just a little stuffy nose and sneezing. Went to friends’ house for dinner. We’d given them the list of food “no no’s.” They’re basically vegetarians, use pure products, eat no dairy anyhow, so my “requests” didn’t bother them at all. The meal was an absolutely delicious mixed bean and vegetable affair and I had two pretty big helpings (still getting my appetite back!). Then belatedly heard it had some seaweed in it – I couldn’t taste or see it at all, but I guess it was in there. Guess that nixing fish and seafood wasn’t enough. From now on will just nix “all things sea-related.” The interesting (maybe disgusting for some) is that the food didn’t seem to want to digest. I was stuck there for five hours (very much wanted to lie down) and felt like throwing up. Couldn’t do that to the hosts, but when I got home, up it came - totally undigested hours later. I wonder if my body, since it wanted to throw the food up, somehow shut down the digestive process until I could get rid of it? Nice thought, eh?
Mental Energy: More than a tad groggy. Many misspellings as I wrote.
Phys Energy: 65-70%
Mood: Okay, quiet.
Sat, 3/25/06, Day 130 Beni, Day 115 Full MP, 75mg mino_cycle 12, day 1
Sleep: Sleep by 2. 1st dose Xyrem 1;30, 2nd dose 3:45. Woke/got up 10. Slept a little better, with many, yet fewer wake-ups! Morton’s neuroma flare, but was able to fall back asleep. I seem to really wake up when I take my 2nd med dose and later around 6. Then doze off and on until fully awake a few hours later.
Sx: None upon waking up, still just a little tired, but definitely improved! Decided to take another 75mg after the 5 day cycle, figuring most of the last one would be flushed out, so little to no build-up. Herxing was very minimal! I call it “background” herxing, because it affects nothing I do. Just a tiny bit of warm flush, tiny little rib and chest herx later in day. Tired legs, but better than past few days. No cold or flu symptoms, which was great. Got nauseated after eating dinner, but we ate out, and I think it was just too oily (not animal fat). Went hat shopping in the evening and found two great hats for summer – one for outside and one for inside when I don’t have to protect my skin. This store has an absolutely amazing selection of hats for men and women and sells online. Finding suitable hats that don’t make you look completely dorky is quite the feat!
Mental Energy: 75-80%
Phys Energy: 70-75-70%
Mood: Sense of humor started to return in spurts, which for me is a good sign that I’m feeling better.
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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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