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jillian
Member in Phase 2
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Posted: Mon Nov 7th, 2005 12:25 |
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continued from Benicar Only progress report at: http://tinyurl.com/dcbqb
In honor of my starting the MP, a friend gave me a 'tortoise and the hare' charm bracelet. She also wrote a poem for me that I wanted to share with y'all:
Slow and steady wins the race
Mino, beni are the base
Mini-steps are just the pace
So nasty bugs will have no place
Slow and steady wins the race.
Slow and stready wins the race
Bringing down too high an ACE
Use that power "mino-mace"
To erase that buggie's case
Exposing him to show his face
Slow and stready wins the race.
Slow and steady wins the race
You control a healthy pace
Giving life a sturdy base
Soon you'll have a happy face
That shows you've won the deadly race
Putting sarcoidosis in its place
Slow and steady won the race!
I started 25mg mino QOD on Oct. 26. The glorious hours of a clear brain that I had peaks of while on the Beni alone vanished in a flash. I started Herxing a couple of hours after the first dose. The mental confusion and/or brain sludge has been tough, I've hardly been able to keep a written journal with a couple of notes. I did stretch a couple of doses to every third day and took Beni 40mgQ4h a couple of times. The last Herxing was more tolerable, so I'm going to graduate to Mino 50mg tomorrow.
The first couple of Herxing episodes included dry coughing that then stopped. In addition to the mental confusion, constant Herx companions (that wane before the next dose) have been headaches, muscle and bone pain (especially upper torso and face), lower back pain, fatigue, GI issues (severe constipation that resolved a few days ago, slight constant nausea, flatulence). A few times my heart pounded very hard and fast for awhile. I've also had one bout of real paranoia, it was very bizarre, came out of nowhere and just left.
The good news is (still) that when I sleep, I'm sleeping deeply. I tend to sleep in 5 hours spurts, sometimes starting at 3am, 6am, 4pm or whenever, then I'm up for about 10 hours, then back to bed! It's kinda screwy, but I'm still going with what my body's requiring.
'til later,
Jillian
Last edited on Mon Nov 7th, 2005 13:08 by jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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jillian
Member in Phase 2
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Posted: Thu Nov 10th, 2005 10:06 |
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11/09 Day 30: Beni 40mgQ6h, Mino 50mg QOD (Dose 1)
My first Mino at 50mg produced my longest 'cardiac' Herx, heart pounding hard and fast. It started about 5 hours after taking the Mino, around 8am. I took my scheduled q6h Beni at 9am. Was going to go to q4h, but my heart settled down just before that. I decided to quantify what for me has been a pounding heart while Herxing. It turns out my pulse was at 90--my normal resting pulse rate is in the low 70s. I rested during this symptom.
Other than that, the symptoms were what have become my usual Herx symptoms right now, 'shaky' and painful muscles, headache, itchy ears, periodic sweating, facial bone pain, weird sleeping patterns, nostrils swollen and sore, constipation. My brain was pretty clear, my sleep well rested, and I'm not freezing all the time (what a relief that is). Due to water problems in my basement, I have to get everything out of it. I felt well enough in the afternoon to go through some of the accumulated stuff for about an hour. (It's amazing how much has stuff has ended up down there  . Because I was too sick to make decisions about what to do with things, it was easy just to store it in the basement!)
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
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Posted: Thu Nov 10th, 2005 15:19 |
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| Jillian, Your posts at this point are so similar to what mine were at about this same time for you. I had a lot of heart pounding at rest. It did help to stay steady with Benicar, and take a nap or relax. I too, had a lot of stuff I just couldn't sort through when I was so ill. At Phase II, I'm finally geting to clearing out piles of junk. Best wishes!--JRF Last edited on Thu Nov 10th, 2005 15:31 by jrfoutin
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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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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Nov 10th, 2005 17:54 |
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Jillian
Thank you for posting.. re constipation.. if necessary, Dr Marshall suggests Milk of Magnesia.. also some find the probiotics help.. see FAQ What kind of probiotics should I use?
take care. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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jillian
Member in Phase 2
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Posted: Sun Nov 13th, 2005 12:45 |
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Thanks for the continued encouragement Janet. I appreciate it.
Forgot about the Milk of Mg Barb. The constipation comes and goes so I'll get a bottle of the stuff and keep it handy. Constipation has been a miserable major part of my disease since I was a kid. I'll start the probiotics next month (financial consideration).
11/10 Day 30: Beni 40mgQ6h
Doc asked me to have my blood pressure checked. Did that today, it was 120/70, very slightly higher than my normal. Slept 8-1/2 hours in a row, at night even--what a treat--it's been a few weeks since that's happened  . The worst Herx symptom was extremely itchy left ear canal, my glands were swollen, but not very painful in my throat. Had the usual Herxing symptoms of headache, neck ache, and fatigued, all very mild though. Had lots of neck pain late in the evening. Otherwise not much at all, no cardiac symptoms at all this time.
11/11 Day 31: Beni 40mgQ6h, Mino 50mg QOD (Dose 2)
Boy, was I moody with this Mino dose! Muscle achiness (muscle pain in rib area), fatigue, itchy ears, swollen glands, lymph node pain in underarm areas, sore breasts, ankles swollen and couldn't get warm were my main symptoms. Nothing nearing intolerable. One thing I've NOT had is the coughing, not for weeks... Again slept 6-1/2 hours at night. It's much easier to tell what day it is with a sleep routine! I hope this continues for awhile!
My Herxing symptoms become noticable about 1-2 hours after taking the Mino, peaking about 10 hours later. Then I do pretty well until about hours 36-40. Interesting to see a pattern...
11/12 Day 32: Beni 40mgQ6h
After sleeping 8-1/2 hours at night, work up feeling pretty well (well for me, not a non-Th1 person well). In mid-afternoon had a couple of hours of the same Herxing as yesterday. Was able to do more organizing in the house before and after the Herxing. That felt wonderful. It's so nice to be able to do something productive (other than knitting scarves and shawls  )!
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Nov 13th, 2005 15:21 |
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Jillian,
It took me to the 18 month point before I had coughing herx. Then I coughed my guts out uncontrollably for over a month. The bacteria in the lungs are aerobic - they love oxygen - and it will porbably take you until an advanced abx combo to start causing them grief. So, as you say, one step at a time...
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jillian
Member in Phase 2
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Posted: Mon Nov 14th, 2005 13:37 |
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Well Trevor, I look forward to coughing my guts out...
11/13 Day 32: Beni 40mgQ6h, Mino 50mg #3 QOD
Slept another 6 hours at night, happy sigh here!
Herxing was very minimal, very dry eyes and some mental confusion about the worst.
11/14 Day 33: Beni 40mgQ6h, Mino 75mg #1 QOD
Ooops I goofed. Woke up for my early am Beni alarm from a very deep sleep. Then accidently took my first 75mg of Mino that was scheduled for tomorrow! Guess I'll get myself one of those compartmentalized pill organizers to keep things clearer. I'll be ready for a potential heavy Herx! Maybe I should go eat a huge breakfast to slow down the Mino absorption !
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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jrfoutin
Research Team
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Posted: Mon Nov 14th, 2005 17:38 |
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Use my mobile phone for an alarm and a night light to verify visually, along with touch that I have the "oval" pill in hand.
As per Dr. Marshall's suggestion, I break Benicar in half for better absorption. ABx Capsules feel different at bend and that helps you know if it is the wrong pill when your eyes don't want to open for quick mid-sleep pill routine.
But I think your idea for a pill organizer is a great idea. I'll look for them for me, too. Thanks!--JRFoutinLast edited on Mon Nov 14th, 2005 17:41 by jrfoutin
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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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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Nov 14th, 2005 17:41 |
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some HELPFUL HINTS FOR THOSE ON THE MARSHALL PROTOCOL
Log sheets; B/P monitors & technique; the right kind of Benicar; digital timers/watches/pillboxes;pill reminder alarms
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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jillian
Member in Phase 2
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Posted: Wed Nov 16th, 2005 13:15 |
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When I reflected on how I took my Mino early, I realized the problem was that I turned the page in my journal and scheduled it wrong because of that. I didn't have the Mino out to take, but had to get up to split the second capsule and take it 'cuz that's was my journal/calender (the ultimate authority ) noted I should do--which was part of my confusion, as I always prepare it the night before! (Tells you how much I've gotten so I don't trust my thinking when I've made notes for myself when my brain is somewhat clearer, or when I thought my brain was somewhat clearer). I've added a small monthly calender to my journal to refer to as a backup! I've also decided to go back to taking my Mino before bed. I'm still feel a pill organizer is a good idea and is on the next shopping list.
11/14 Day 31: Beni 40mgQ6h, Mino 75mg QOD (Dose 1)
Well, the day of my 'oops' early dose of Mino wasn't bad. The Herxes were all tolerable--the most irritating was feeling like I had a potful of expresso. Too bad the buzz didn't include being able to do something physically! An odd symptom was not being able to taste the flavor of foods at all, and my tongue was numb. I've had an altered/less sensitive taste mechanism for years, always figured it had to do with my nasal sores and scarring. Now I'm wondering if CWD in the tongue might be part of this issue.
I also feel like all the moisture's been sucked out of my body! My eyes are very, very dry (will get preservative-free artificial tears next time I get to a store), it seems like my saliva is less than usual, the inside of my nose is dry and crusty (even though I'm putting ointment in it all the time, as usual)--yet I have some watery post-nasal drip.
The mental confusion was spotty and worse than unusual.
11/15 Day 31: Beni 40mgQ6h
Again slept another 7-1/2 hours, good, deep, refreshing sleep. Also been getting up to urinate only once during these days of good sleep. This is a BIG change from 'normal'. Typically, for decades, I've gotten up 4 to 5 times a night, sometimes even more.
My Herxing was more intense today, but still tolerable. I did take Beni once 40mgQ4h, around lunchtime as the Herxing felt like it was building quickly. In addition the to my normal symptoms, my underarm lymph nodes were exceptionally sore, glands in throat swollen and sore, fingers were swollen, concentration and short-term memory were pretty non-existent during the day. Once I had a couple of seconds of being very dizzy and disoriented. I was glad I was sitting down when that hit. My heart pounded hard at the slightest exertion (like walking a few steps) in the late afternoon and evening. My almost always cold feet were frigid. I even resorted to wearing my sheepskin winter boots in the house to no avail. In fact, my feet made the foot part of the boots cold! Then, suddenly they felt hot and burning. That lasted for awhile, then they were cool, but not uncomfortable. When I went down stairs, I felt like I was walking through a heavy gravational field. I couldn't help but laugh it was so odd feeling--I had this vision of a slow-moving-1960s cartoon character...
'til later,
Jillian
Last edited on Wed Nov 16th, 2005 13:18 by jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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MicB3x
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Posted: Wed Nov 16th, 2005 15:49 |
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Hi jillian,
It's funny you should mention that. I was looking through my old High School Year books and I noticed that I was voted most likely to be a slow moving 1960's Cartoon Character. Looks like we finally made it. And they said we didn't have it in us. I guess we showed them.
Have a good one, Mic
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Not MP: Dx 1977 Sarcoidosis NeverTreated/ Classic Sarc Symptoms/ Dec04 25d=20/ 1,25d=40/ Sept06 25d=9, 1,25d=45 Quit Vit.d Dec. 04/Bolle 100's outdoors only
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jillian
Member in Phase 2
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Posted: Sun Nov 20th, 2005 19:42 |
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Mic, I guess it was obvious to your classmates that you already had Th1 inflammatory symptoms even then!!!
11/16 Day 37: Beni 40mgQ6h, Mino 75mg QOD (Dose 2)
11/17 and 18: Beni 40mgQ6h
11/19 Day 40: Beni 40mgQ6h, Mino 75mg QOD (Dose 3)
11/20 Day 41: Beni 40mgQ6h
I waited two days between Mino doses not because the Herxing was difficult but because I 'felt' that's what I should do.
Herxing has been tolerable--although I must admit to being almost intolerably moody! I'm into PMS so I don't know which is Herx and which is monthly hormones raging. In general I've had very achy muscles, sometimes muscles that feel like they're shaking (internal feeling), extremely dry eyes, lymph glands in the armpit area are constantly sore, fingers and toes have been cold. Of course aggravating that could be that I'm keeping the house at 62 degrees F due to the increase in natural gas prices. I AM bundling up more than usual though so I'm unsure what is what... I've ordered an electric blankie to wrap around myself when I'm not in bed. I need something that generates heat 'cuz once I'm into a 'cold cycle' I don't seem to generate heat to warm an extremity up!
The more unusual Herxes I experienced on Dose 2 included a tongue that felt swollen (wasn't, that senstation lasted a few hours only), left kidney ached, felt like I had a large rock in my stomach and an extreme sensitivity to sound (that lasted two days). When I finally turned everything off in frustration (including the computer as the CPU fan seemed to be screaming at me) I realized the real problem was not the external sounds but tinnitus! Usually my tinnitus is in the background. (I heard a short interview with a musician who has tinnitus and how he's composing music for 'Tin' ears. The music was interesting, shows non-Tin ears what it can be like: http://www.npr.org/templates/story/story.php?storyId=5020435 )
Mino Dose 3 unusual Herxing has included: soles of my feet burning making it hard to walk/stand, left TMJ is making squishing sounds, as is my neck (no extra pain, just the usual achiness), when I close my eyes I sometimes see a light and/or dark halo, left kidney still aches. I think I'm gonna go sleep this one off some, hopefully will wake in a better mood 
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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lantotibet
Guests visiting Phase 1/2/3
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Posted: Mon Nov 21st, 2005 15:59 |
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Jillian--
Can you tell me a little more about your light/dark halo? I have this as well, but didn't think much about it until I read what you wrote.
Thanks--Chris
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onsetsarc87 dxsarc'90 pred 75mgx6wks 90 CVjointrep Lthumb'02 breastca 02 TIA'02/ joints musc bones neuro sinus eyes hearing/tinnitus perip neurop asthenia tendonitis arthritis/ D25=12 D125=37/ 10/05 mino/ben; Ph2:1/06
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jillian
Member in Phase 2
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Posted: Sat Nov 26th, 2005 14:30 |
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Chris, The halos aren't there all the time. The one I see most often is a small dark ring around the total edge of my vision. I notice it the most in very dim light and/or with my eyes closed in dim light. When it's there during the day, not very frequently, it seems like I'm looking down a short tube. The light halo is not as frequent, and when it comes, it's always with the dark halo surrounding it. The other visual disturbance I've had periodically since a child is what I call light flutters--like indistinct butterflys of light. I used to lay in bed and entertain myself watching them...
11/21 Day 42: Beni 40mgQ8h, Mino 75mg QOD (Dose 4)
11/22 Day 43: Beni 40mgQ6h
11/23 Day 44: Beni 40mgQ8h, Mino 75mg QOD (Dose 5)
11/24 Day 45: Beni 40mgQ8h
11/25 Day 46: Beni 40mgQ8h
A couple of hours of sleeping off the Herx worked the day that I did it (see last entry). I did conclude that the couldn't-get-warm thing was Herxing as it comes and goes.
Herxing continues tolerably. I've been doing Beni q8h to 'make up' for the times in I've needed to do it (or will need to do it) q4h. Been feeling good when I do it, and adjusted it to q6h when I seemed to need it. Other than that, no meds have needed to be adjusted.
Sleep continued good until the past two nights, now the time I sleep is less and I wake frequently. That's been good for my eyes, I've gotten lubricating eye drops and they've helped with the extremely dry sore eyes (Herx). When I do sleep, it is still better and more refreshing than pre-MP.
Have had a couple of brief cardiac Herx episodes (minutes not hours). Also pressure in my left kidney. Moodiness has evened out pretty well, but I've been totally un-motivated. Don't wanna, don't wanna, don't wanna (whatever should or needs to be done). The 'usual' Herxing is still muscle and bone pain (especially neck and shoulder area), armpit lymph glands sore, the dry eyes, glands in throat slightly swollen, mild headache.
I'm going to continue on 75mg Mino.
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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lantotibet
Guests visiting Phase 1/2/3
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Posted: Sun Nov 27th, 2005 01:47 |
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Jillian--
Thank you very much for your very complete answer--it was very helpful. You sound as if you are doing a great job working the MP!!
Take care--Chris
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onsetsarc87 dxsarc'90 pred 75mgx6wks 90 CVjointrep Lthumb'02 breastca 02 TIA'02/ joints musc bones neuro sinus eyes hearing/tinnitus perip neurop asthenia tendonitis arthritis/ D25=12 D125=37/ 10/05 mino/ben; Ph2:1/06
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 576 |
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Posted: Sun Nov 27th, 2005 17:44 |
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Hi Jillian,
Wow, you sound like you're doing really well on the MP - all the yuckies considered! I'm really glad to hear your sleep is better too than pre-MP. That's one I'm looking forward to.
The moodiness is a bear, isn't it? I'm known for being even-tempered, but now on the Benicar, I'm totally reactive and unmotivated. So seeing that your moodiness has lessened as well, makes me feel a little better. As for the lack of motivation - seems to be really common. It's super hard getting things done, eh? I'm surprised I even bother to get dressed sometimes.
I also relate with your feeling cold much of the time. For years now, in the cooler months, I've worn a fleece hat, double, triple layers of fleece on top and bottom, woolen socks, heavy slippers, a scarf and sometimes mittens or gloves - in the house. Oh, not to mention double/triple quilts. Note that I live in sunny southern California, so our cooler months are nothing compared to yours. It'll be awfully nice when our inner thermostats get a clue!
Best! Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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jillian
Member in Phase 2
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Posted: Tue Dec 6th, 2005 04:22 |
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Beni 40mgQ8h, Mino 75mg q72h
Yesterday I took my 9th Mino 75mg. I'm still Herxing slightly at q72h; at 48h I've found I don't want to add more. Not that it's intolerable at that point, but I just don't want to push it to where I'm totally not functioning. Sure wish somebody'd come every day and fix meals for me. Deciding what to eat, food preparation and clean up are the biggest decisions of the day and most energy consuming! Actually, I usually make big quantities of things so I eat leftovers a lot...
My eyes seem to be finally calming down a bit, less dry and irritated. I can go 4 hours now between lubricating eye drops and I don't look hung over. My tear ducts are slightly swollen, but not painful. Very puffy under the eyes too. Actually, pretty puffy all over. My hands have felt like clubs the past couple of days.
My ususal Herxes continue. The can't get warm feeling comes and goes, as does the jaw pain. Pressure in the left kidney has become a daily occurence. Today the right feels the same way. A couple of times the trunk of my body has felt like I'm in a vise grip. Very painful. That has lasted a couple of hours then stops. My sacrum/lower back has felt like the joints were loose. It was painful but tolerable. My shoulders/ arms/ underarm lymph glands continue to be very sore. A weird Herx has been my upper lip feeling like its alseep. Tinnitius continues louder than 'normal' and high pitched. Been pretty tired, been napping as needed.
Also noticed that my lungs are more sensitive to cold, even with a scarf wrapped around my mouth (wind chill was 26 below zero today). They burn like crazy for awhile after I walk to the mailbox (only 25 feet from the door). Think it'll be pretty easy to stay in my reasonably warm cocoon this winter!
Sleep patterns continue off, but when I sleep I still sleep better and deeper than pre-MP. I have an alarm for my Beni, and bought a multi-alarm watch at Wal-Mart for $10 (thanks Mic for the tip) to wear when out. I was pleasantly surprised to discover I can't use the watch at night as I sleep through it (had the regular alarm as backup so didn't mess up Beni schedule). I used to sleep so lightly that when my alarm clicked before ringing I'd wake up.
Herxing with Dose 9 is noticably less. I'll take Dose 10 on Wed., and if I continue with this level of Herxing, I'll go to 100mg next week!
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Dec 6th, 2005 06:28 |
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Jillian,
Most folks take 3 months to work up to 100mg of Mino, so no need to push your luck before the Holiday season. Enjoy yourself this year
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jillian
Member in Phase 2
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Posted: Sun Dec 11th, 2005 10:40 |
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Beni 40mgQ8h, Mino 75mg q72h
Surprise  , you were right Trevor! Suddenly started Herxing pretty strongly on 75mg again...
Hours after posting that I wasn't Herxing much on the 75mg, I got hit with one of the strongest Herxes to date. I took a couple of ibuprofen and it didn't touch the bone and muscle pain (neck felt like a whiplash injury, hot acid flowing in the spine, sacrum hurt, facial bone pain, lots of painful, fragrant flatulence--an unpleasant, embarassing symptom I've had since a young child, can't wait for this disease symptom to disappear). I considered adjusting my meds, but decided to try to sleep it off to see if it was just a short strong Herx. That turned out to be the case. I was still Herxing somewhat strongly, but tolerably, on and off for another 24 hours.
I took dose #10 of mino 75mg on the 7th, had virtually no Herxing on the 8th and 9th. Not until mid-afternoon on the 10th (yesterday) did another almost as strong Herx kicked in. Basically the same symptoms, minus the facial bone pain, and including post-nasal drip. I was gonna take dose #11 this morning, but will wait until tomorrow (earliest) as I still feel crummy enough to wait (mostly the muscle pain).
So, I'll stay here at mino 75mg for a while yet .
'til later,
Jillian
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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jillian
Member in Phase 2
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Posted: Wed Dec 21st, 2005 16:36 |
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Miracles have happened in the past 24 hours:
1. I slept 7-1/2 hours, deeply and straight through the night last night without having to get up to urinate! I literally cannot remember that happening ever in my adult life!
2. My doc THANKED me for bringing the MP to his attention. And he's going to do the MP with my severly-disabled-with-fibromyalgia room-mate! (For those of you who are new, it took me three years and half a dozen docs before I found one who would do the full MP with me.)
Sigh, life is gettin' better and better. I still marvel at the thought/feeling that I'm actually getting WELL, it's only a matter of time. All that lies between me and sound health is time (and patience  ).
Beni 40mgQ8h, Mino 100mg q72h started 12/17/05
Went up to 100mg mino on Dec. 17th, I had virtually no herxing at 75mg. The evening after taking dose one I thought I was gonna crawl out of my skin, tingly, crawly feeling. Not too nice. Fortunately didn't last very long. Then it was more my 'usual' Herx symptoms on and off: loud tinnitus, pressure headache, lymph glands in upper arms/arm pits sore, neck pain, neck and shoulder muscles hurt/burning type of pain, kidney pressure, somewhat dry eyes (lubricating eye drops needed about every four hours). I also had a little of fast hard heart beats and some respiratory wheeziness (about my pre-MP normal), and a little of 'light flutter' eye disturbance.
I took dose 2 yesterday, and have had more of the same usual Herxing just mentioned.
As mentioned above, yesterday's doc visit went well. Don't seem to have any sun/light flare problems (did Beni q4h yesterday). I did notice that my vision was much clearer--I may be able to renew my driver's license this year after all without needing new glasses. Also I've been able to sleep on my back for a few days. I've only been able to sleep on my sides for years as I had too much spine/muscle pain to sleep on my back.
'til later,
Jillian
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PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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