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Adrianne
Member in Phase 3
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Posted: Fri Dec 14th, 2007 02:26 |
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Dearest Barb,
How wonderful that you are back home! You have been sorely missed. I hope and pray that the worst is over and that you can rest and heal in the comfort of your own home, surrounded by those who love you. 
XOXOXO,
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl 25D<7(Mar08) NoIRs limited outings covered
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Aunt Diana
Member Advocate
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Posted: Fri Dec 14th, 2007 13:18 |
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| Hooray! Hooray! What wonderful news. It's a Christmas present to us all.
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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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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 901 |
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Posted: Sat Dec 15th, 2007 10:17 |
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Merry Christmas and Happy New Year...thinking about you!
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Rico
Member in Phase 3
| Joined: | Wed May 31st, 2006 |
| Location: | |
| Posts: | 248 |
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Posted: Sat Dec 15th, 2007 12:51 |
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Good to see you back, Barb. Nikki and I wish you a quick and smooth recovery. Merry Christmas to you and Pat.
Rico
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No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
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PaulT
Member in Phase 3
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 290 |
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Posted: Sun Dec 16th, 2007 21:39 |
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Hi Barb
So glad to see you're at home - take it easy
Paul
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Dec 16th, 2007 23:48 |
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10am Monday 17th December
Thank You All for all private and posted messages.. I am sorry I am unable to reply to all. I will post what is happening here, as I can do so.
The main job at hand still seems to have been all the time, and continues to be.... apart from the 'dexa', managing the immunopathology.
MP meds: Benicar Q4-6H, Mino 50mg << none now
Other meds: Full Quercetin TID, Diabex, Insulin 25u/s BID. blood sugars stable.
Cortrate(as replacement for dexa) from 25mg BID: weaning at 1/4 tablet every 3 days(= nausea + shakiness).
Light exposure: blinds and drapes over windows. not outside.
Lower GI pain was stopped. << is back again..
Diaphragmic/Gall area discomfort: transient, tolerable. Used x 1 mino 50mg dose as required to settle.
Feet and lower legs: are very highly pufft.
Legs go to sleep quickly when sitting on my computer chair.
skin: graining etc.
tiredness, weakness: Resting a lot as required.
transient depression, 'fed up' (dexa effect I think).
walking: Still weak, walking carefully and slowly (and awkwardly) around the unit from furniture to furniture or holding Pat's arm.
Thank You All.. AB..Last edited on Mon Dec 17th, 2007 20:41 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Zars
Member in Phase 3
| Joined: | Sun Dec 3rd, 2006 |
| Location: | Perth, Australia |
| Posts: | 62 |
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Posted: Mon Dec 17th, 2007 08:15 |
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Hi Barb,
I am absolutely thrilled that you are (finally!!) home. I hope that your progress continues in a positive direction.
I bet you are relishing sleeping in your own bed again, in your own house!,
All the best,
Zars XXXX
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ME/CFS Ph1May07 ModPh2Jul07 Ph2Jan08 Ph3Aug08 benicar 40 mg q6h paracetamol magnesium beconase,NoIRS, outings covered + zinc, 25D 13.2 Aug08
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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: Mon Dec 17th, 2007 14:55 |
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Hi Barb,
So glad you are home and doing better!!! You are in our thoughts and prayers. I know things will get better for you. Much XOXO,
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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Deb Grabetz
Member in Phase 2
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Posted: Tue Dec 18th, 2007 10:48 |
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Hi Barb...
It was good to hear from you...It will be better to hear that you're feeling, much, much better...
I can't thank you enough for all you do for us all...
Merry Christmas from the States... 
Hugs to you and yours...Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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jean west
Member in Phase 2
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Posted: Wed Dec 19th, 2007 07:18 |
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Hello sweetheart, Sorry we haven't been in touch but really thinking about you and glad that you are now out of hospital. Hope your recovery is swift in 2008 - you were such a support to both Janet and I. Happy Christmas and onwards and upwards, you are an inspiration to us all!
lots of love, Jean and Janet xx.
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Lyme/CFS since 2001 or earlier. amitryptiline tramadol zopiclone; 1,25D = 38, 25D = 29. Sept 05: Avoid light&D/ Oct 05, Beni 40mg Q4H. Dec 05, Mino, 25mg qod.
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anniemac48
Member in Phase 3
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Posted: Sat Dec 22nd, 2007 21:34 |
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Dear Barb,
Happy to hear your home, may you get stronger every day and I wish you the best possible christmas in the circumstances you can have surrounded by your family.
Love from Annie
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RA 125D42 Ph1 Mar07 NoIRs Ph2 Jun07 25D7 Jan08
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DianeC
Member in Phase 3
| Joined: | Sat Aug 20th, 2005 |
| Location: | New York, USA |
| Posts: | 619 |
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Posted: Sun Dec 23rd, 2007 05:11 |
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Dear Barb !
That is wonderful news that you are now in the comfort of your home with family where you will be able to relax and heal.
Wishing you the very best for the holidays and that the New Year will bring you much happiness and improvement with your health.
Thanks again for always being there for everyone else.........you are remarkable!
Hugs..........
DianeC
Last edited on Sun Dec 23rd, 2007 05:11 by DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
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Posted: Mon Dec 24th, 2007 04:25 |
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2.30pm Monday 24th December ... Merry Christmas
Thank You All for all private and posted messages.. I am sorry I am unable to reply to all. I will post what is happening here, as I can do so.
Managing the immunopathology and weaning the steroid.
MP meds: Benicar Q4-6H with half inbetween as required.
Other meds: Full Quercetin TID, Panadol /Tylenol bedtime, Diabex, Insulin 25u/s BID. blood sugars stable.
Cortrate(as replacement for dexa) from 25mg BID down to approx 30mg now: weaning at 1/4 tablet every 3 days(= nausea + shakiness).
Light exposure: blinds and drapes over windows. not outside.
pain in bottom and etccs that go with it: has been intolerable. I believe it is due to weaning the steroid so am waiting till that is finished to assess further.
nausea
Diaphragmic/Gall area discomfort: transient, tolerable. use extra Benicar as required.
Feet and lower legs: are highly pufft.
Legs go to sleep quickly when sitting on my computer chair.
skin: graining etc.
mouth is parched dry thru the night.
eyes: sticky, blurry
ears, pinna: itchy
tiredness, weakness: Resting a lot as required. become nauseated very quickly- unable to read many posts.
walking: Still weak, walking carefully and slowly(and awkwardly) just to where I need to go - from furniture to furniture or holding Pat's arm.
feet, toes, numb continues
2 little fingers L hand: numb continues
I can feel I am getting some stronger, even if I am still weak.. so yes it is a quiet Christmas for the 2 of us again.
I am told I am sounding stronger so I am hoping that is indicative of my heading in that direction.
Thank You, and best wishes to All.. AB..
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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 |
| Status: |
Offline
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Posted: Sun Dec 30th, 2007 11:13 |
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9pm Sunday 30th December ...
Managing the immunopathology and weaning the steroid.
MP meds: Benicar Q4-6H with half inbetween as required.
Other meds: Full Quercetin TID, Panadol /Tylenol bedtime and Q4H for throat etc, Diabex discontinued to assess re GI, Insulin 25u/s BID. blood sugars stable.
Cortrate(as replacement for dexa) from 25mg BID down to approx 18mg now: weaning at 1/4 tablet every 3 days(?= nausea + shakiness).
Light exposure: tint, blinds and drapes over windows. not outside.
pain in bottom and etccs that go with it: intolerable. maybe due to weaning the steroid. will assess further when finished.
nausea : more today again
esophageal: burning, lump when swallowing.
Diaphragmic/Gall area discomfort: transient, tolerable. use extra Benicar as required.
Feet and lower legs: are pufft. skin on top of feet > red and sore. the puff hurts when I walk.
Legs go to sleep quickly when sitting on my computer chair.
skin: graining etc. patches of dry.
mouth is parched dry thru the night.
eyes: sticky, blurry, itchy.
ears, pinnae: itchy
tiredness, weakness: Resting a lot as required. become nauseated very quickly.
walking: Still weak, walking carefully and slowly(and awkwardly) just to where I need to go.
feet, toes, numb continues.
itch between 2 little toes of each foot. keto applied.
2 little fingers L hand: numb continues
new: R throat, ear, glands, back of skull: sore. panadol and extra Benicar helps.
:both jaw joints hurt when biting down
I am still weak. Getting up to 'walk', and walking, is a huge effort. sighh.. The Immunopathology can really be felt strongly when I get on my feet.
Thank You, and H A P P Y N E W Y E A R best wishes to All.. AB..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Vicki SA
Member in Phase 3
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Posted: Sun Dec 30th, 2007 22:38 |
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Happy New Year Barb and Pat.
I hope 2008 brings great improvement to your health Barb.
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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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PTMKaren
Member in Phase 3
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Posted: Sat Jan 5th, 2008 04:25 |
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Barb: Sorry to hear that symptoms are intolerable. Ugh! Sending you good thoughts and wishes from NJ. We hope this year brings you some relief.
Karen & Chris
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Lyme/RA 4/06, 1,25D78, Hubby w/sarc,Toprol/BP, soy patch/HRT|,calcium supp, Apr07 25D9.8, work, NoIRs, lowlux home, Ph3 3/07
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
| Status: |
Offline
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Posted: Mon Jan 7th, 2008 13:28 |
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11.30pm Monday 7th January ...
Managing the immunopathology and just finished weaning the steroid. so now to recover from that.
MP meds: Benicar Q4-6H with half inbetween as required.
Other meds: Full Quercetin TID, Panadol /Tylenol bedtime and Q4H for throat etc, Diabex discontinued to assess re GI, Milk Thistle TID, Insulin 25u/s BID. blood sugars stable.
Cortrate(as replacement for dexa) weaning at 1/4 tablet every 3 days from 25mg BID (?= nausea etc). : have now taken the last quarter tablet last night.
Light exposure: tint, blinds and drapes over windows. not outside.
This week I can get myself out of/up from the recliner ie Pat doesnt have to lift me.
pain in bottom and etccs that go with it: has decreased most of the time. intolerable sometimes. maybe due to weaning the steroid. will assess further when finished.
pressure in bottom
nausea : difficult to know when and what to eat.
esophageal: burning, lump when swallowing.
easily chokey.
ulcer back of tongue
Diaphragmic/Gall area discomfort: transient, tolerable. use extra Benicar and Milk Thistle as required.
Feet and lower legs: are pufft. skin on top of feet > inflamed and sore. the puff hurts when I walk.
Legs go to sleep quickly when sitting on my computer chair.
R upper leg: has a numb area on it to almost match the numb area on the L upper leg. It feels like ice is on it. The L side is from a bike accident as a child (the numb area is larger now as immunopathology)
skin: graining etc. patches of dry. itch all over.
mouth is parched dry thru the night.
eyes: sticky, blurry, itchy.
ears, pinnae: itchy
tiredness, weakness: Resting as required, yet also restless/insomnia continues. chills
walking: Still weak, walking carefully and slowly(and awkwardly) just to where I need to go. too weak to stand in one place.
feet, toes, numb continues.
itch between 2 little toes of each foot. keto applied. getting better.
2 little fingers L hand: numb continues
R throat, ear, glands, back of skull: sore. panadol and extra Benicar helps.
:both jaw joints hurt when biting down...
all joints affected by weaning steroid. wake and can hardly move. have to keep the Tylenol coming.
Full body swollen continues. L abdo noticably more.
inflammation on 2 hangnails lingering. and usual toenail.
Insomnia
Waiting for the effects of the steroid to go, and see what I am left with. Hoping for better.
I was looking again at the cards and messages from you all. Thank You, and best wishes to All.. AB..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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melinda
Member in Phase 3
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Posted: Fri Jan 11th, 2008 03:17 |
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Hi Barb
In Oct I went off to Spain for the first time in 5 yrs and stayed 5 weeks and then I've been North to family twice , once to help my niece go through bowel surg and again for Holidays..So completely out of the MP loop.
I really will spend a few days on cathcing up with the MP'ers. I am 3yrs and 5mos into the MP and I'm a person who runs around the world now . Hopefully you will get through the road block soon and back on the MP road to recovery. My thoughts and prayers are with you. Big hug. Melinda
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Lyme, parathyph86, hepB73, MP 9/04, 125D58, 6/07 D2514, Ph2 02/04, Ph3 3/06, ambien, zanax, NoIRs
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anniemac48
Member in Phase 3
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Posted: Fri Jan 11th, 2008 21:57 |
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Hi Barb
Just been reading your lastest post, You must be one hell of a tough cookie it is a inspiration to me and to think even though you are experiecing all that and you still reached out to me, persistance was never my strong point.
Thank you again, love Annie
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RA 125D42 Ph1 Mar07 NoIRs Ph2 Jun07 25D7 Jan08
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CJ
Member in Phase 3
| Joined: | Fri Apr 1st, 2005 |
| Location: | Byron, Michigan USA |
| Posts: | 254 |
| Status: |
Offline
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Posted: Sat Jan 12th, 2008 17:05 |
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When we are both better...let's meet in Scotland for a vacation!
I may be ill, but I'm not THAT ill.  Hang tight! You will do it!
Love ya!
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Saroidosis/lungs, 25D7 (8/07) Spireva,Ibuprofen, NoIRs, lite exp r/t work
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