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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Thu Dec 8th, 2005 03:03 |
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Thursday December 8th 4pm cycle 3 level 1 / Day 7 / mino > 25mg Q6H / Lowered Benicar dosing / MT / Quercetin TID / PBX BID/
Slept better. woke 1.30am for meds and back to sleep for a change.
Continued mino 25mg Q6H keeps the herx managed, tolerable.
antbite cramps strike hard a few minutes to half an hour pre meds due time. relief by meds.
Relatively speaking I think today is my best day so far. it feels like a lifting of something. not doing more but the feeling is different.
Thyroxine side effects of being hyperthyroxed and stopped med must be past
and the Benicar change seems to be working for me.
Day 7 and the herx has lightened off compared to previous days herxing.
lighter full body herx, with gut herx waxing and waning.
all symptoms in above posts are less today.
Feet same swollen.
subcutaneous very ouch.
some mild soreness around head, neck.
occasional knee and elbow pain.
always worse by evening. dead stopped by bedtime.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Member Advocate
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Posted: Thu Dec 8th, 2005 03:52 |
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| Your post today has me @@@@@@@@ xoxox donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Jill T
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| Joined: | Mon Dec 27th, 2004 |
| Location: | New York USA |
| Posts: | 437 |
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Posted: Thu Dec 8th, 2005 18:10 |
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What good news! It looks like the new Beni dose is really helping you! Yahoooooooooooooooo!
 Jill
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CFS/ChronicLyme Babesia headaches fatique aching chest pains arrhythmia sob paresthesia GERD dizziness depression years of amox for tonsils| 12/04 25D=23,1,25D=77, 8/05 25d=21.6, 10/05 25d=8| probiotics magnesium PH I 2/05, phase II 3/06
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Thu Dec 8th, 2005 22:46 |
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Thank you for All good friends able to celebrate for me. 
Friday December 9th 11.40am cycle 3 level 1 / Day 8 / mino > 25mg Q6H / Lowered Benicar dosing / MT / Quercetin TID / PBX BID/
Slept till 12mn for meds and back to sleep till up at 3 am. 6H.
Continued mino 25mg Q6H keeps the herx managed, tolerable. can go a little over time so far today. also need all other meds as above.
Day 8: no antbite cramps today. more like a holiday from herx. relatively speaking.
looks like I am settling into stability again after all the thyroxine thing. 3 months, and symptoms were building up before that.
with light full body herx, and gut herx waxing and waning.
all symptoms in above posts are less today.
Feet same swollen.
subcutaneous very ouch.
some mild soreness around head, back of skull.
no obvious increase in ability or energy yet.
always worse by evening. very hot days.. have a fan and an air con.. 34C/ 95 degrees inside. time to put the air con on..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Thu Dec 8th, 2005 23:10 |
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"Thyroxine side effects of being hyperthyroxed and stopped med must be past"
Woohoo!!!! You know it has to be great to overcome a "lifetime" medication like that. But you did it!!!! It hasn't been easy, either. You really are a champion.
I do hope you get a mini vacation from moving the big boulders now and again. (Just don't do it in the sun .)Last edited on Thu Dec 8th, 2005 23:11 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
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Dec 9th, 2005 20:24 |
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Saturday December 10th 9.25am cycle 4 level 1 / Day 9 / 1 / mino > 25mg Q6H / Lowered Benicar dosing / MT / Quercetin TID / PBX BID/
Slept till 12mn. auto wake for meds and back to sleep. 7H. dreams.
Has been some mental (the cant do's) and emotional (teary fragile) symptoms last couple of days.
antbite cramps back again yest afternoon when meds due.
wheezy coughy wont settle yest afternoon and today.
The continued mino 25mg Q6H not holding the inflammatory symptoms yesterday afternoon and this morning even with other meds as above. time to do day 1 again.
full body herx is moderate, and gut herx waxing and waning.
eyes
Feet swollen.
subcutaneous ouch.
some transient pin pricks and stings.
mild transient pain in bones.
these just make me jump in the moment.
area of paresthesia on my left shoulder blade.
chlorine BO.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Morris W. Milnes
Member
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Posted: Sat Dec 10th, 2005 03:41 |
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You are amazing. You are feeling doubtful and fragile, and yet you remain a solid rock for the rest of us.
thank you,
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Dec 11th, 2005 16:00 |
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Monday December 12th 5am / cycle 4 @ level 1 / Day 3 / Phase 2 Aug05 mino > 25mg Q6H / Benicar 40mg Q6H / MT / Quercetin TID / PBX BID/
Slept. auto wake for meds and back to sleep.
Miserable with emotional (teary fragile) symptoms last couple of days.
wheezy coughy.
The mino 25mg Q6H not holding the symptoms even with other meds as above.
Desperation: increased Benicar to 40mg Q6H last night. will monitor today. gone to 20mg Q2H..
full body herx is moderate, and gut herx waxing and waning.
eyes
Feet swollen.
subcutaneous ouch.
some transient pin pricks and stings.
mild transient pain in bones.
these just make me jump in the moment.
area of paresthesia on my left shoulder blade.
chlorine BO.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Mon Dec 12th, 2005 15:59 |
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Tuesday December 13th 5am / cycle 4 @ level 1 / Day 4 / Phase 2 Aug05 mino > 25mg Q6H / Benicar Q6H / MT / Quercetin TID / PBX BID/
took Benicar 20mg Q2H all yesterday, and 40mg to go to bed. monitoring need for Benicar today.
Slept well. 7H
Woke normal for MP today.
full body herx is moderate, and gut herx waxing and waning.
Drawing in seat and legs when sitting. ouch.
Feet a little less swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
some transient pin pricks and stings.
mild transient pain in bones.
these just make me jump in the moment.
burning area of paresthesia on my left shoulder.
chlorine BO.
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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 |
| Posts: | 19444 |
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Posted: Tue Dec 13th, 2005 17:26 |
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Wednesday December 14th 6.25am / cycle 4 @ level 1 / Day 5 / Phase 2 Aug05 mino > 25mg Q6H / Benicar 20mg Q6H, 40mg night / MT / Quercetin TID / PBX BID/
took Benicar 20mg Q6H again all yesterday and all was MP normal.
Had a little window of lift / clearer than usual in the afternoon..
resting as needed.
Benicar 40mg to go to bed.
Slept well with some wakes. 7H
Woke normal for MP today.
full body herx is moderate, and gut herx waxing and waning.
Drawing in seat and legs when sitting. ouch.
Feet a little less swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
eyes sticky blurry.
I always forget to say eyes are bloodshot, glassy and deep in the sockets, with black rings around.
mild transient pain in bones.
burning area of paresthesia on my left shoulder.
sweeter BO today. is there a tiny glimmer of hope today.. but not more able yet.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Dec 14th, 2005 01:44 |
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re Lowered dose of Benicar:
I have trialed the 20mg Q6H and seemed to be going along ok till suddenly mentally emotionally unable..
Took Benicar 20mg Q2H to get me out of that and
had to have one more go to make sure.. yesterday, one day of 20mg Q6H, doing ok.. some maybe transient wonderings.. hmm...
today could feel the inflammatory symptoms starting to build.. Began Beni 20mg Q4H
chokey mucus cough overtaking me... fragility coming.. nausea.. so back to Benicar 20mg Q2H for now till I get on top of it.. (it is day 5 of the present Phase 2 cycle).
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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: Wed Dec 14th, 2005 17:34 |
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Thursday December 15th 6.35am / cycle 4 @ level 1 / Day 6 / Phase 2 Aug05 mino > 25mg Q6H / Benicar 20mg Q2H, 40mg night / MT / Quercetin TID / PBX BID/
Benicar 40mg to go to bed.
Slept well with some wakes. 6H
main problem is nausea, stomach. and full mucus in throat and post nasal drip. drinking water, eating fruit. more probiotics.
coughing when meds are due. taking Benicar 20mg Q2H. mino 25mg Q6H.
still feeling the little glimmer. must be a move in the right direction. not more able yet. later add: today, walking from A to B (chair to chair) is a little easier than before because full body/gut herx is a little less, still some aura.
resting as needed.
full body herx is milder, moderate, and gut herx waxing and waning.
Drawing in seat and legs when sitting.
Feet a little less swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
eyes.
mild transient pain in bones.
burning area of paresthesia on my left shoulder.
sweeter BO.
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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 |
| Posts: | 19444 |
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Posted: Thu Dec 15th, 2005 17:45 |
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Friday December 16th 6.45am / cycle 4 @ level 1 / Day 7 / Phase 2 Aug05 mino > 25mg Q6H / Benicar 20mg Q2H, 40mg night / MT / Quercetin TID / PBX BID/
Benicar 40mg to go to bed.
woke and up thru the night then slept well.
stomach settled some. post nasal drip.
wheezy. chest. coughing chokey when meds are due. taking Benicar 20mg Q2H. mino 25mg Q6H.
full body herx is milder, moderate, and gut herx waxing and waning.
Drawing in seat and legs when sitting.
Feet a little less swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
eyes.
mild transient pain in bones.
burning area of paresthesia on my left shoulder.
sweeter BO.
News: Can walk more normally today so that I can actually feel / recognise for the first time that I have almost siezed up from not being able to move. very quickly is too much / exhausted.. I remind myself that all it is now, is practice..
resting as needed.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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anne p
inactive member
| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
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Posted: Fri Dec 16th, 2005 00:22 |
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Dear Barb
I have been following your progress each day and mentally sending good thoughts your way. Take care, glad your body loosening up a bit now.
love and hugs
from a silent but still very watchful
Anne  xxxxxxxxxxxxx
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Sx24years CFS/Lyme/ spinalstenosis abx long term Labs 25D,22-1,25D,23.46(unreliable)MP 7/01/05 PH.1.24/01/05,PH2.5/03/05 stopped MP Sept20 resumed phase1 Jan4/06/ somac40mgday Neurontin 600mg 3xday duatrol3xday imigran50mgprn panadeineforte prn
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Dec 16th, 2005 16:16 |
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Thank You to All..
Saturday December 17th 5am / cycle 4 @ level 1 / Day 8 / Phase 2 Aug05 mino > 25mg Q6H / Benicar 20mg Q2H, 40mg night / MT / Quercetin TID / PBX BID/
afternoon and night. step up of wheezy feel chest. post nasal. choky cough. these are the main problem now. Pre MP, I would have said that my lungs were fine.
I remember that pre MP I did have the big bringing up of thick mucus every so often.. and it was becoming more frequent.
again last night. then stomach settled.
taking Benicar 20mg Q2H. mino 25mg Q6H.
Benicar 40mg to go to bed.
slept well.
full body herx is milder, moderate, and gut herx waxing and waning milder.
Drawing in seat and legs when sitting.
Feet swollen.
subcutaneous ouch
oily face and hands
itchy face and scalp
eyes.
burning area of paresthesia on my left shoulder.
BO chemical again.
recently I have noticed another change.. Doing MP I had had a 'runway' down middle of my back of sloughy skin cells each day.
I did some walking around the furniture to get a feel of it and to use what I have. began to feel sick. a good reminder for eager beaver to go slow, so stopped. it did loosen me up some and I can feel the muscle soreness. I remind myself that all it is now is practice.. my back muscles need to be strengthened too for standing.. resting as needed.
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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: Fri Dec 16th, 2005 22:09 |
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| Way to go!!! Awsome 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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Dec 17th, 2005 19:02 |
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Thank You to All..
Sunday December 18th 8am / cycle 4 @ level 1 / Day 9 / Phase 2 Aug05 mino > 25mg Q12H / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
Symptoms have lightened off yesterday afternoon and night.
Went out for a drive (husband driving) - to buy a takeaway salad dinner..(delicious by the way) I am beginning to be able to think in terms of small outings. that is big..
I dont find the headlights to be dazzling any more. but cant see thru the NoIRs with the blurred eyes thing going on anyway.
I get a shock though as to my limitations. In my head I think I can do anything.. but uh oh.. I say to my husband, we should go for a little walk at nightime.. and then I notice that to walk inside is far enough yet. at least the longed for thought process has finally arrived..
Couldnt get to sleep.. a bit of time on the Board and back to bed.
Slept so well and even Slept IN.. and less symptomatic. mino to Q12H and Beni to 20mg Q3H.. what a difference a day in MP makes..
one day at a time.
aahhh feet are down some more today too..
heyy this is looking good..
Drawing in seat and legs when sitting.
subcutaneous ouch
eyes sticky gritty sore blurry.
burning area of paresthesia on my left shoulder.
BO chemical again.
eager beaver is shown the necessity to go slow, simply by limitations. I remind myself that all it is now is practice.. my back muscles need to be strengthened too for standing.. resting as needed.
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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: Sat Dec 17th, 2005 20:11 |
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Barb,
My heart leaps for joy for you.
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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Jill T
inactive member
| Joined: | Mon Dec 27th, 2004 |
| Location: | New York USA |
| Posts: | 437 |
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Posted: Sun Dec 18th, 2005 14:10 |
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"What a difference a day makes!" That statement is perfect for a mantra while on the protocol. It may very well keep us going, knowing from experience that this is so true.
Great to see that you are having some lifting of symptoms!!!!
So happy to hear that!!!!
Jill
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CFS/ChronicLyme Babesia headaches fatique aching chest pains arrhythmia sob paresthesia GERD dizziness depression years of amox for tonsils| 12/04 25D=23,1,25D=77, 8/05 25d=21.6, 10/05 25d=8| probiotics magnesium PH I 2/05, phase II 3/06
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Dec 18th, 2005 17:17 |
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Thank You to All..
Monday December 19th 6.20am / cycle 4 @ level 1 / Day 10 / Phase 2 Aug05 mino > 25mg Q6-12H / Benicar 20mg Q3H, 40mg night / MT / Quercetin TID / PBX BID/
More tired than anything else. very tired.
I was able to converse(only) with visitors. my husband was at work.
Herx tolerable with beni 20mg Q3H and mino 25mg went to about 8H.
feet swelled again during the day. down a little 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. As I can, try to do a little walking around inside, and standing, to increase muscle strength..
11am ADD: it is worth noting that today with less herx my muscles are stronger anyway.. all by themselves.. that is even better..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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