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Jill T
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| Joined: | Mon Dec 27th, 2004 |
| Location: | New York USA |
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Posted: Tue Aug 2nd, 2005 20:45 |
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Yeah Barb, you did it! You're on your way to getting deep into those pesky areas now!!!!! Soooooooooooooooo happy for you!
xoxoxo 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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Posted: Tue Aug 2nd, 2005 21:37 |
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Thank You Frans, Jo, Jill and those who have PM'd me... your support is really appreciated..
Wednesday August 3rd 9.40 am. PHASE 2 / level .5 / cycle 1 / Day 2 / no mino day
so far... This is different. I am a little brighter. and I have a deep tiredness that is clean not sludgey.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 378 |
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Posted: Tue Aug 2nd, 2005 21:39 |
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Congratulations Barb! I hope to be there in a 6-8 weeks! Happy Herxing!
Robert
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Aussie Barb
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Posted: Wed Aug 3rd, 2005 01:44 |
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Thank you Robert ...
Day 1 and a half into first cycle of Phase 2 ....
The herx began to rise.. cramps in the gut and the diaphragm all tense and sore to touch, and feeling like a stitch in the right side.. became too uncomfortable, so took Benicar again with relief..
sleep: I need to sleep.. and have a deep sleep... and wake feeling like I never want to get up again.. Before Phase 2, I wouldn't sleep so soundly and was always keen to get up and attem.. different... perhaps more relaxed..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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kathleen
inactive member
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Posted: Wed Aug 3rd, 2005 01:48 |
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Dear Barb,
It's so great to click on your thread and read about the next stage. I hope that your better days aren't far in the future! Do you think that different herx means that infection in different arwas is being affected? I hope so!
Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Aussie Barb
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Posted: Wed Aug 3rd, 2005 18:57 |
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Thank you Kathleen..
Thursday August 4th 7 am. PHASE 2 / level .5 / cycle 1 / Day 3 / mino 50mg today QOD
First time for herxy painful left shoulder, back ache. took Benicar. and right side and diaphragmatic inflammation.. jaw, ears, ache.. throat, glands sore..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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CJ
Member in Phase 3
| Joined: | Fri Apr 1st, 2005 |
| Location: | Byron, Michigan USA |
| Posts: | 254 |
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Posted: Wed Aug 3rd, 2005 19:23 |
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( In my Best John Mellencamp voice  )
Herx so GOOD!
Come on Baby -
Make it Herx so good!!!!!
 CJ
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Saroidosis/lungs, 25D7 (8/07) Spireva,Ibuprofen, NoIRs, lite exp r/t work
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Aussie Barb
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Posted: Thu Aug 4th, 2005 15:44 |
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Friday August 5th 3.45 am. PHASE 2 / level .5 / cycle 1 / Day 4 / mino is 50mg QOD no mino today / Benicar 20mg Q3H / Quercetin TID
Yesterday was a mentally challenging day. Luckily I am able to know it is herx and treat it accordingly which helps..
I found that taking the Benicar in half tablets Q3H was more helpful again now.
I had some muscle spasm in my neck.. and anbite cramp again last night..
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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 Aug 5th, 2005 01:37 |
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Hi Barb,
Your descriptions of what you're feeling are very evocative. Congrats on being so "in your body," and thanks for helping me be more so.
Take care,
shegeek
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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
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Posted: Fri Aug 5th, 2005 18:43 |
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Thank you Shegeek and Tux ..
Saturday August 6th 6.45 am. PHASE 2 / level .5 / cycle 1 / Day 5 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID
Today is a better day so far..I slept well.. gut herxing. I really think that the first few days I may still have been suffering some of the effects of the last 2nd abx, even though I had stopped it 60H before beginning this one.. the last few days have been difficult.
most of the time recently I can feel my pulse in my lips..
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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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Posted: Sun Aug 7th, 2005 02:29 |
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Sunday August 7th 2.30pm. PHASE 2 / level .5 / cycle 1 / Day 6 / mino is 50mg QOD > not today / Benicar 20mg Q3H / Quercetin TID
Last evening the full body/heavy gravity herxing. couldnt get to sleep last night. Today is memory flashing herxing of "no no no". also sub conscious 'I dont want to be here or do this" herxing. heavy heart / chest area. chills. tolerable but at times unpleasant.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Morris W. Milnes
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Posted: Sun Aug 7th, 2005 06:40 |
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Kind of like I'm not looking forward to taking my Z when I get back. It's better in the long run though.
Keep pushing on,
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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Betsy G
Member in Phase 3
| Joined: | Fri Oct 8th, 2004 |
| Location: | Meridian, Idaho USA |
| Posts: | 409 |
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Posted: Sun Aug 7th, 2005 09:53 |
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Good morning Barb,
I hope you are feeling a bit better by the time you read this. Your sig line says Phase 2, are you taking M+Z to get the herxing you are having now? Thinking of you and pulling for you 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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Lee
Member in Phase 3
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Posted: Sun Aug 7th, 2005 14:03 |
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You Go Girl!!! I know what you mean about those "chills" ....kinda nice but weird too ....maybe a "herxchill" ..... Good to know I am in such good company with you and several other re-visiting "Z-Land"!!! This time we will make it through!!!
Thanks BarB for ALL that YOU do!!! Lee
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2003 SARC w/COPD Hyper-Flex Fibro.
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.7 silymarin/sunlight w/noirs
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Aussie Barb
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Posted: Sun Aug 7th, 2005 17:48 |
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Thank You Morris, Betsy, Lee....All in this Community..
Monday August 8th 5.45am. PHASE 2 / level .5 / cycle 1 / Day 7 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID
Yesterday's memory herxes just come from nowhere, and even though they are not necessarily sad memories.. eg one was just a picture in my mind of a place. Where does the sadness come from, attached to these memories... It is the *alone-ness*, not loneliness.. the alone-ness of having to follow a different road to Family if One is to choose to find One's Health. The alone-ness involved in preserving the little energy One has, to care for Self.. I think daily, of Members of my Family that I would love to call and tell them of my thoughts and love for them, but I do not have the energy required to handle the call, the requirements of so called *well society*..
going to sleep was a pleasant relief to get away from it all.. slept well with a few wake-ups.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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TickTock
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| Joined: | Tue Sep 28th, 2004 |
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Posted: Sun Aug 7th, 2005 20:05 |
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Barb,
Just wanted to send you a message to say that i support you during these terrible "depression" type herxing. I relate so much and know how frustrated you must feel. I know the heavy weight of such a long time trying to stay positive, and sometimes it's the painful reality that you really are alone that hurts the most about this disease. You've been crucial to my journey especially when i'm down and out. I hope you know that you're not as alone as you think. We're all alone together. I hope this type of herxing will be of short duration. I hear your suffering and I understand.
Hang in there Barb,
TT
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Dx: Lyme Disease,Bartonella 25yrs/ 9/26 25D=9 1.25D=79 4/05 25D=8 1,25D=44/ 10mg Lexapro,.5 Xanax / 9/04 start MP/ 5/21 Benicar40mgQ6H Q
8/7/05 Phase 2 10/24 Benicar 20mgQ6H
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anne p
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| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
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Posted: Mon Aug 8th, 2005 01:26 |
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Dear Barb
I also know just what you are talking about. Our families have no idea how we would be if we were healthy. They and we miss out on so much. For 25 years I have been saying......I'd like to do "this" (phone, visit, write, cook etc) if I were well. It hurts not to be able to show our love in all the ways most people take for granted, and to just partake of normal family life.
The knowledge they have that we do love them and want to be with them, must overide all the rest in their minds though. One daughter of mine in her teens suffered dreadfully and became a very wild and alienated child, and I thought I had lost her for ever, but today is a well adjusted married happy person who rings me almost daily. She is coming to visit this weekend.
Those feelings and thoughts which we thought we had dealt with over the years, I think come back with the herxing. I get flashbacks frequently (I do anyway, whenever I have a flare of SX). I have to talk reasonably to myself to get through them. It's most unpleasant though 
I hope this particular type of herxing goes way soon and life is much more enjoyable for you
a big long hug and much love Anne xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
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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
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Posted: Mon Aug 8th, 2005 17:21 |
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Thank You TickTock, Anne, All ....
Tuesday August 9th 5.45am. PHASE 2 / level .5 / cycle 1 / Day 8 / mino is 50mg QOD > not today / Benicar 20mg Q3H / Quercetin TID
Yesterday: easy morning after the mino. going into herx in the afternoon and night. some misery that I was able to relieve with the meds, and full body herx. How does it feel?
it feels like a pressure coming from the whole inside of me. I can keep it tolerable.
I am finding that a lot of things that had no explanation before MP now have an explanation. I am finding that with MP I can call the shots. I have my power back. I can recognise my symptoms as herx and I can adjust my medications to lower the symptoms if I want to. but of course I know I have to herx.
Thru my herxes I am learning who I am. It is like standing back and seeing me. I am also learning the truth about how sick I am. (have always been in denial) eg last night I saw an actor in a soapie who was obviously sick by the way he looked and how he was getting around. I could see that he was sick.. and for once, I could see that is how I look.
I would say to the Dr, "I feel sick" and he couldnt get past, that feeling *sick* wasnt nausea.. I know now that it is the inflammation in me..., I can really feel it and know it now with herx.
I can look back to my symptoms before MP. I couldnt drive for weeks at a time.. I was too weak to get out of the car. Often I could only sit in the car and look out over the ocean. I would do as much as I could whenever I could, but I wasnt *getting* *anywhere*..
So, while the lights have gone off, the lights have gone on too.. I was, am, seriously ill, and before MP, there was nothing I could do about it. Denial has it's uses. The thought of the work that has to be done is daunting... I have begun seeing the reality. One moment , one day at a time has worked while I was in denial, so I will consciously pick it up and use it now.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Aug 8th, 2005 18:44 |
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Hi Barb
You certainly hit the nail on the head - the feeling of taking control of your own recovery remarkably boosts your tollerance for discomfort. If you know that there is a gain to the pain, it is far easier to pile it on. Feeling helpless at the hands of doctors who are fumbling around in the dark can lead to a real downhill slide.
My own doctor friend has never been ill in his life and he freely admits that however hard he tries - his ability to empathise resides purely in his immagination. He still believes that the ability to get better is closely linked to how strong your mind is (we all know that that is complete bollocks). My reply to him is that I have a very strong and positive mind, and I am very positive that I am ill!!
My advice is to keep yourself occupied (something that you are very obviously good at) - it is amazing how fast time actually goes when you are distracted away from self-pity.
Keep up your very good work Barb - you will one day (and not too far away) look back and wonder at how you ever coped.
Take care
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Aussie Barb
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Posted: Tue Aug 9th, 2005 01:06 |
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Thank you Guss.. We are the Strong Ones.. to have done what we have done, and to have survived..
Day 8 today: I had some small almost leg cramps again this morning, which are usually a sign for me that it is time for the abx, and I have a tendency toward a running immune system. my gut herxing continues tolerably today. I may do 8 day cycles, will see how I feel by the morning.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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