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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Dec 19th, 2005 23:46 |
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A different sort of report today:
I think in my head that I am so physically clever but of course I am NOT..when I go to do anything I am very unable ..
But ...some sort of window has opened in my mind... it says that I can go out a little.... where I couldnt even try before, wasnt interested and of course couldnt manage any aspect of it comfortably... this is good progress.
Having a shower is a big effort and takes a sit down and lie down rest to recover..
getting dressed in minimum possible is a huge effort, with help..
I did manage to sit and converse with visitors the other day (was here by myself).. while they kept our glasses filled with water.. and I had the air con and the fan on high.. I have been more knocked out emotionally ever since.. but I was able to do it.
we have driven out 2 nights now to buy some salad dinner as DH is working long days.. I walk with support very slowly the short distance into the shop and back. all progress..
I am herxing more heavily than I realised. I have now realised that I have a lot of all body herx that I may not necessarily *feel* as herx, which is present as weakness and debility.. I had a window yesterday where some of it actually lifted enough that I could tell the difference.. that was a lightbulb moment in itself. aaahhh... >>
The weakness and debility is heavy herx.. I sure am a work in progress.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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BARNEY
Member in Phase 3
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Posted: Tue Dec 20th, 2005 00:24 |
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Barb,
Such wonderful news, we are all rejoicing with you and count on your continued improvement.
When we are well, we will meet, I have to see this wonderful person and give her a hug.
HANG IN THERE, WE WILL MAKE IT!!!!!!!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
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Posted: Tue Dec 20th, 2005 02:00 |
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| To even feel like going out for a salad is great news. Even moving slowly from ride to shop and back to ride and home again is progress. So glad your windows are finally opening to view the future. You can do it. I know you can!
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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
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Julia
Board Staff (on leave)
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Posted: Tue Dec 20th, 2005 06:27 |
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Great stuff, Barb! Take care - we need you!!! 
 Julia
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Sarc dx Apr.03, uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D June08:9.6. Not now avoiding light; glasses for sun only. Life is good! Julia's story
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Tue Dec 20th, 2005 15:21 |
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Thank You to All..
Wednesday December 21st 4.20am / level 1 / day 12 / Phase 2 Aug05 mino > 25mg -Q6-12H / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
I have been feeling emotionally exhausted after the visitors.
I am becoming more aware of emotional energy.. of what it is, of using it, and the feeling of the lack of it.
Pre MP I knew I couldnt bear to see someone heading towards me to *talk* .. it was like pulling the electric cord from the point..
so I isolated myself to survive by moving to a new locality and by cutting contact with almost all..
Following the visitors this week, although I managed at the time, I have been in definite deficit after the event. I have found that it takes emotional energy to have an exchange of niceties in any form. not just face to face or on the phone.. it is why I havent been able to write letters or cards for years now..
Rest is good but doesnt pick up the emotional energy very fast.. it seemed to be lagging.. this is all part of the healing that is happening.. and good to recognise how we need to take care of ourselves, by setting boundaries to how much we can do.. by delegating what we cannot manage.. and I let go of the obligations and expectations years ago, in favor of doing what I can manage and what I enjoy..
Have been tired. could feel the picking up some in the emotional energy last night. no anxiety or depression.
I am content and managing all well in the moment.
Herx tolerable with beni 20mg Q3H and mino 25mg went to about 8H.
feet are down a little more this morning again.
Drawing in seat and legs when sitting.
subcutaneous ouch.
eyes .
burning area of paresthesia on my left shoulder.
BO
resting as needed.
what has happened so far: the difference is that the full body / gut herx occasionally now has little times of being lifted enough, and in those occasional times, I can now stand or walk a little time or distance, when before - walking standing have been hard work with the herx like a heavy aura. I always had to quickly sit down on the next chair available.
The mental and emotional healing has been here quicker than the physical.
what I have learnt since healing with MP re so called psychological issues: the issue isnt the issue... it is all in the tissue..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Betsy G
Member in Phase 3
| Joined: | Fri Oct 8th, 2004 |
| Location: | Meridian, Idaho USA |
| Posts: | 409 |
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Posted: Tue Dec 20th, 2005 22:36 |
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Hi Barb,
I just read your post about going out for a salad dinner. Great news!! Your "windows" are fascinating and promise a brighter future for you. Congratulations on your progress! Wishing you all good things,
Betsy G
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Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Dec 20th, 2005 23:04 |
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Thank you to All...
Wednesday December 21st 12MD / level .5 / day 12 / 1 / Phase 2 Aug05 mino > 25mg - assessing / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
I had let the cycle run for longer to experiment and see how long I could go on just the frequent mino, no 2nd abx on due day.. thinking that if it held me now, as it hasnt done by itself in the past, that it may be easier for a while..
Lips have been dry, splitting, peeling, sore. and as mentioned I have been lacking in emotional energy, very tired, going down down, to intolerable.. not relieved by taking the mino or other meds without the 2nd abx.. so have begun a new cycle with the 2nd abx at the next lower dose to see if that is enough to hold things ok.. relief is happening.. will have to see how often I need the mino now..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Wed Dec 21st, 2005 04:07 |
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How happy I am to hear of these changes for you. You're on your way, for sure. As they say in the CD the recovery is as insidious as the onset of the illness.
Great news - maybe this will be a good Christimas for you. I hope so.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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CLefelt
Member in Phase 3
| Joined: | Sun Oct 24th, 2004 |
| Location: | New Jersey, USA |
| Posts: | 318 |
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Posted: Wed Dec 21st, 2005 14:18 |
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Cheers and more cheers!
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Dec 21st, 2005 15:30 |
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Thursday December 22nd 4.30am / level .5 / day 2 / Phase 2 Aug05 mino > 25mg - assessing / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
slept well till 2 am. 5H. got up.
lower dose 2nd abx is holding ok.
mino 25mg is 16H now. am coughing, mucus throat. have had Beni Q etc.. will see if it settles or if I require the mino again.
I am pleased to have the thyroxine out of the way. being symptomatic with it and it's going seems to have complicated matters for some time.
body and gut herx is less.
feet some swollen.
lips still dry.
subcutaneous ouch.
eyes.
BO
resting as needed.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Dec 22nd, 2005 19:32 |
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Friday December 23rd 8.35am / level .5 / day 3 / Phase 2 Aug05 mino > 50mg / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
I had an appointment yesterday so although I felt very too tired at the mino 25mg dose, I didnt want to increase on the day of going out. I continued at mino 25mg. I took Benicar 40 mg Q4H for appointment and as required thru the night.
I was shocked at how exhausted I was getting dressed etc and to walk in etc.. I was a little better coming out and home after an hour.
I had pre-arranged per phone when making the appointment that I could go straight to an inside room instead of being anywhere near the Natural light.. and immediately I walked in the door, I was escorted to the room. wow!!! it was 12 months since my last appointment here too..
slept well. woke Q4H for Beni. ahh..
Increased mino to 50mg this morning.
shoulder parasthesia still present.
body and gut herx is tolerable enough. I sit down quickly when I have to.
feet some swollen.
lips improving.
subcutaneous ouch.
eyes improved some.
BO
resting as needed.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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shegeek
Member in Phase 3
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Posted: Fri Dec 23rd, 2005 22:17 |
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the issue isnt the issue...
it is all in the tissue..
Cute! Catchy!
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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
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Dec 24th, 2005 00:13 |
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Thank You All ... and Merry Christmas!!!
Saturday December 24th 1pm/ level .5 / day 4 / Phase 2 Aug05 mino > 50mg QOD / Benicar 40mg Q6H, day and night / MT / Quercetin TID / PBX BID/
Last night I went out briefly to Target with husband. I was shocked and scared re my walking. In another part of me I do know that it is only a matter of doing it and getting better and that there will be no holding me down.. but last night it was scary. (of course, putting it in perspective... at least I was out!!! that is a start 
The colors of new clothes in the shop looked yucky, dirty.. is it my eyes or has the world changed all the colors while I havent been looking...
When I went to bed, my chest was aching whichever way I lay layed lied, even after all meds, so some aspirin settled it and off I went to sleep and slept well.
The lower dose of 2nd abx with the mino 50mg QOD is almost a non herxer, very stable as long as I take my Beni and Q etc.. so I will stay here while it suits.. this must be what is called tolerable. this is the quietest herx time for me on MP yet that I recall.
shoulder parasthesia still present.
body and gut herx is tolerable enough. I sit down quickly when I have to.
feet going down.
lips improving.
subcutaneous ouch.
eyes improved some.
BO
resting as needed.
It is Christmas Eve here... the Family are all at the Farm. I am thinking of springing it on everyone that I will go home as well with my DH for the day or the next couple of days. so I will be seeing you from a different computer if this happens.. apparently the room is darkened and we would be able to travel the 3H each way at night.
all best wishes to All, Barb ...
 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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patrickburke
Member Advocate
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 400 |
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Posted: Sat Dec 24th, 2005 00:24 |
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Xmas love to you Barb.
XXX
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; still covered since 6/04; Noirs ended 6/07; Minimal light avoidance.
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BARNEY
Member in Phase 3
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Posted: Sat Dec 24th, 2005 01:19 |
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Barb,
This news is the only Christmas present I need. To know you have such a breakthru and able to go shopping and possibly going to the farm with your family for Christmas. God has truly answered my prayers.
It is about time for you to have this breakthru cause you are always there for us.
Have a very MERRY CHRISTMAS AND A HAPPY NEW YEAR!!!!!
Luv, Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Julia
Board Staff (on leave)
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Posted: Sat Dec 24th, 2005 08:15 |
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Dearest Barb, if the love and good wishes of all the members of MP.com could hold you up, you'd be floating instead of walking. Have a great Christmas.
xx Julia
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Sarc dx Apr.03, uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D June08:9.6. Not now avoiding light; glasses for sun only. Life is good! Julia's story
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jillian
Member in Phase 2
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Posted: Sat Dec 24th, 2005 16:29 |
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We're cheering you on from across the big pond Barb, enjoy your family!
'til later,
Jillian from North Dakota
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PrimryDX-PulmoSarc79,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-. Noirs & total light control in house.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Dec 24th, 2005 18:07 |
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Christmas Day.. Happy Christmas to All
Thank you All my Dear Friends
Sunday December 25th 7am / level .5 / day 5 / Phase 2 Aug05 mino > 50mg 36H / Benicar 40mg Q4-6H as required, day and night / MT / Quercetin TID / PBX BID/
Last night I took Benicar and mino a little early before the trip as I was going off a bit herxwise. We left in the dark and drove to here. the Farm, the Family. as expected, they were out when we arrived.
After we settled in, I lit the tealight candles Christmas Tree and left it burning for them to see when they came home.. It wasnt long and there was "Look Look at this.. " and they came into the room to see Dad and were so happily surprised to find Mum also.
chest ache in bed again, aspirin, relief. slept well.. the room with computer is very nicely dark.. the computer is dial up and a bit slower but we will get there..
shoulder parasthesia still present.
coughing wheezy is the most pressure when the meds are due.. also antbite cramps strike.
feet swollen.
subcutaneous ouch.
eyes improved some.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 631 |
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Posted: Sun Dec 25th, 2005 00:45 |
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Barb--Wishing you a "Merry Christmas and a Happy New Year" like none other! Thank you for all that you have done for us! It is now your turn to enjoy the blessings of better health!
God Bless . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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Aunt Diana
Member Advocate
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Posted: Sun Dec 25th, 2005 01:27 |
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| Merry Christmas Aussie Barb
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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