| Author | Post |
|---|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Sat Nov 26th, 2005 16:18 |
|
Sunday November 27th 5am / cycle 11 of PHASE 2 / cycle 2 level 1 / Day 6 / mino > 25mg still Q12H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
slept weller. am ok. feel to be flat line. all else the same.
subcutaneous ouch is high recently.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Sun Nov 27th, 2005 04:45 |
|
24H 6pm
No frequent mino or Q required to hold herx.
some dizziness at 18H. relieved by having a rest and some food.
gut and body herx same.
no other changes noticed.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Mon Nov 28th, 2005 04:18 |
|
Monday November 28th 5pm / cycle 11 of PHASE 2 / cycle 2 level 1 / Day 7 / mino > 25mg Q24H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
slept till 2.30am and got up.
napped this morning.
Gut herx and wheeze / cough had risen this afternoon..
Q and Pbx taken with some relief, took the edge off it.. will probably require the daily mino 25mg any time now.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Tobi
Member
|
Posted: Mon Nov 28th, 2005 05:41 |
|
Barb,
What are you noticing on your reduced dose of Benicar.( 20mg rather than 40mg 6 hourly)? Are you more/less comfortable?
Tobo
____________________
CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Mon Nov 28th, 2005 05:57 |
|
Thanks Tobi
I'd like to give it more time to be able to comment.. in other words there has been no dramatic difference as yet. I will report any findings as I know them.
Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Mon Nov 28th, 2005 16:04 |
|
Tuesday November 29th 5am / cycle 11 of PHASE 2 / cycle 2 level 1 / Day 8 / mino > 25mg none for 36H so far / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
the gut herx even though rising quite high yesterday afternoon was managed by the quercetin. no mino required. have gone 36H since mino now.
gut herx is there, and waxing and waning, but tolerable.
full body herx may have slowed.
slept till 3am (6H) and got up.
Yesterday, my lips became dryish, peeling a little, sore.
some chest heaviness at times.
eyes blurry sticky. eyes have been bloodshot sick for a long time. dark circles around eyes.
some transient bone pain, collar bones and upper arms.
hands go numb when sleeping
face itch, no rash.
face and hands oily.
subcutaneous ouch
left shoulder blade small patch of burning
Chlorine BO
Drawing sensation where seated continues.
I think I can move a little easier, maybe feel a little lighter, but debilitated enough not to be sure. I will be pleased if this lifts some. I dont think I can say I am any more comfortable. I am practically non functional except for on a computer..
no wheeze / cough at the moment.
my feet swelling is going down.. my feet look misshapen as it goes down unevenly.
no antbite cramps.
I have kept a list of symptoms so that I can evaluate any changes..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Tue Nov 29th, 2005 02:27 |
|
3pm update
I am heading toward the 48H mark with no frequent mino.
I have had to continue Quercetin and probiotics as previously to relieve symptoms.
When I went over the 6H for the Benicar, there was a pressure in the gut that I wasnt sure which med was due to relieve this, and then realised it was Benicar.. fixed it..
Herx has continued to wax and wane.
Normally have little to no social contact. Just had a visitor and I was surprised to see that it is still somewhat challenging.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Tue Nov 29th, 2005 14:10 |
|
Wednesday November 30th 3am / cycle 11 of PHASE 2 / cycle 2 level 1 / Day 9 / mino > 25mg / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
was coughy chokey sensitive yesterday.
I wont be pushing for the 48H mino schedule any more.. it was too much in the end.. I often find it difficult to define how much is too much till I can hardly move. I think I should stick with Daily mino whilever I am herxing enough in the day to rely on the other meds to settle symptoms..
My muscles may be less prone to spasm at any move.
11am edit: chest mildly sore. pulsing in body. wheezy wet difficult cough, mucus in throat. I have had the beni, and now the 2nd Q for the day, and will see if that brings relief enough.. will have the mino if it is not enough.
2pm: mino 25mg at 20H with relief.
5pm: went to Dr this afternoon. BP 110/75. Dr very supportive.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Wed Nov 30th, 2005 15:26 |
|
Thursday December 1st 4.30am / cycle 11 of PHASE 2 / cycle 2 level 1 / Day 10 / mino > 25mg Q12H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
Well, since I changed to the new Benicar dose. I did all the experimenting on extending the mino...
I sat thru hard enough gut herxing but I thought I can stand this, to see if I could extend the mino out to 48H.... and I could.. BUT...
I found out that I paid for it afterwards. was more miserable and sick.
so.... no more pushing it for me..
Maintaining the new Benicar dose,
and taking frequent mino 25mg prn for as long as it takes. I feel happier.
Feet still swollen, but maybe less.
other symptoms same as posted above.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Frans
Member in Phase 2
|
Posted: Wed Nov 30th, 2005 19:55 |
|
Aussie Barb wrote: I feel happier
That's good to hear for a change Barb !
xoxox love Frans
____________________
Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
|
BARNEY
Member in Phase 3
|
Posted: Wed Nov 30th, 2005 20:35 |
|
Barb,
I also started the Benicar 20mg q6hrs and feel great. Pain has lifted. I did not change the Mino at all. Why were you extending it out? For experiment only?
Hope you feel a lot better since you have stopped having the mino experiment. It is sounding a little more hopeful for you today.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Thu Dec 1st, 2005 07:03 |
|
8pm update:
Taking mino 25mg Q12H today. all herx though still enough - was more tolerable than the last few days... Herx does truly so very easily sneak up when you are symptomatic..
My feet are more swollen tonight. hurting on the tops.. must go get my feet up.. Tomorrow is day 1 of the new cycle. should help.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Thu Dec 1st, 2005 18:47 |
|
Friday December 2nd 7.45am cycle 3 level 1 / Day 1 / mino > 25mg Q6H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
Coughy clearing throat so mino 25mg Q6H today.
Feet swollen.. tops of feet still burning feel, hurting.
Maintaining the new Benicar dose
other symptoms including full body herx and gut herx as above are maintaining but more tolerable than before.
5pm update: strong herxing day. mino 25mg Q6H continued.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Fri Dec 2nd, 2005 17:41 |
|
Saturday December 3rd 6.40am cycle 3 level 1 / Day 2 / mino > 25mg Q12H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
stomach uncomfortable last night. more IBS yesterday when herx was harder.
slept weller last night.
tolerable full gut / body herx so far, cough settled at the moment so mino 25mg Q12H. I take it as needed.
other MP meds not so tight schedule required to hold.
Feet have settled a little.
Eyes are quite sticky blurry, blinking rubbing to see.
hands go to sleep when sleeping.
Drawing in seat and legs when sitting.
subcutaneous ouch
As herxing is the good news in MP, I always have plenty of good news.. and I am able to manage by adjusting my meds as needed.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Sat Dec 3rd, 2005 19:47 |
|
Sunday December 4th 8.40am cycle 3 level 1 / Day 3 / mino > 25mg Q12H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
Day 2 yesterday herxing was a bit quieter but plenty enough for anyone who would be trying to really function or work..
needed Q12H mino 25mg. definite, no extension.
slept ok last night. some wakes, abstract dreams.
Eyes.
Drawing in seat and legs when sitting.
Feet swollen but not as sore on tops.
Day 3 today a bit slower herxing again. still enough but nice surprise.
mino 25mg can go over Q12H but not to full day.
other MP meds not so tight schedule required to hold.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Sun Dec 4th, 2005 15:23 |
|
Monday December 5th 4.25am cycle 3 level 1 / Day 4 / mino > 25mg Q6H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
Day 3 yesterday herxing was a bit quieter in the morning and then rising higher in the afternoon.
needed mino 25mg before Q12H.
wakeful night. 1am gut herx, took mino. chest pressure, took Benicar.
Eyes.
Drawing in seat and legs when sitting.
Feet swollen.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Mon Dec 5th, 2005 17:40 |
|
Tuesday December 6th 6.45am cycle 3 level 1 / Day 5 / mino > 25mg Q6H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
I am still fine tuning the mino dosing re herxing.
will take mino 25mg Q6H to hold it better than I have been. I have been tending to let it run and end up too worse for wear later.
too debilitated sometimes.
half dreaming wakeful night.
Eyes.
Drawing in seat and legs when sitting.
Feet swollen.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Tue Dec 6th, 2005 15:32 |
|
Wednesday December 7th 4.30am cycle 3 level 1 / Day 6 / mino > 25mg Q6H / Benicar 20mg Q6H / MT / Quercetin TID / PBX BID/
Continued mino 25mg Q6H. giving a better coverage.
full body herx, with gut herx waxing and waning to some degree.
wheezy cough is troublesome. can get chokey.
Slept better. prob from tighter mino schedule. got up 2.30am. 5H.
Eyes continue.
Drawing in seat and legs when sitting.
Feet swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
some fingers and toes have transient ache or needle stick feel.
back ache and feel *something on it*.. have had this since a child.
some transient bone pain, upper arms collar bones, neck, skull.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
shegeek
Member in Phase 3
|
Posted: Wed Dec 7th, 2005 10:24 |
|
Hi Barb,
You are always so in tune with your body and your healing state, and I am wondering if you have some formal way of making contact with your body and keeping track of what is happening for you. Do you have any exercises or meditations that you do on a regular basis? Do you have certain times of the day that you take stock? If you do, how do you stick with it, and did it take work to form the habit?
I have a little exercise that I do; it consists of focusing on each part of my body in turn, breathing two or three times and sending it a message on the exhale ("I love my neck...I love my shoulders"...etc). It helps me relax and notice where I am tight. I have trouble sticking with it, tho, and I am more likely to notice when I can't work a calculus problem than when my muscles hurt. Please forgive me if you've answered this elsewhere in your posts.
____________________
FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
|
|
Posted: Wed Dec 7th, 2005 17:35 |
|
Thank you Shegeek
I am sorry to say that I dont know of any one way other than a lifetime of learning by experience and of seeking to make that experience a better one.
The last 2 posts at the bottom of this thread explain some of the changes I decided to make due to the pain and misery of trying to be 'normal' when my sickness decreed limitations became more than obvious to me ... I finally became conscious of the limitations and that I needed to stop. and be honest with myself and those around me.
Due to the health of other Family Members also, I decided that living just one moment at a time was what we could manage best, that any more than that was too much at the time. It took some practice to get to living in the moment.. and as long as I can manage in this moment, I can remain content and peaceful.
This began Pre MP. I was so very miserable and had to find a way to help myself.. as of course there was no other help available.. I needed to go from just being miserable with symptoms, to being able to know what would relieve..
and then next time, to recognise what was happening earlier than previously, becoming conscious of the first signs and to then remember what I had to do about it.
When I made a recognition, I would write it down or ask a friend or my husband to remind me next time so I didnt spend so long in not knowing land suffering. and I would leave a reminder object in sight.
Now. Similar to any physical herxing, - when I have misery or emotional herx, I find that it helps to be able to be outside of the experience as well, and to be able to say.. this is herx.. what do I need to do to relieve the symptoms.. this too will pass.. (not always said as serenely as this sounds)
I am accepting of the herxing symptoms because I know that my body has been activated into taking care of me now, and that I am lucky enough to have a way to manage that response to a tolerable level for as long as it takes..
I would say that learning to live in the moment.. to deal with the what truly is - now. not the what might be. but what is. It has taken a lot of scary realisations, and grief, and courage. and great support and friendship and Love. it has all turned out to be blessings in the end..
This link and the links within may contain helpful information PAIN CONTROL
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
|
|
|
