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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19395 |
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Posted: Fri Jul 4th, 2008 12:22 |
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Friday 4th July.
MP meds:
Benicar 40mg Q6H only a couple at Q4H
2nd abx: level 2. 2nd dose
mino 100mg: 6 doses Q40 to 72H
I always need to use the antibiotics to modulate immunopathology.
Other meds:
Insulin 9u/s Daily. blood sugars stable.
panadol: 1 or 2 per day. helps calm immunopathology.
Light exposure: tint, blinds and drapes over windows. no going out.
1 outing to Dentist in afternoon yesterday.
-Full body heaviness and swollen:
RUQ swelling may be slightly less.
-looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands, and some on forehead.
-Body stiffness and discomfort: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side.
-back: aches, and down R side at times of high immunopathology.
-hands and wrists painful. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers same
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles- same.
-tops of hands and forearms: same. grainy feel..
-new: dull headache
-eyes: same glazed and bloodshot. change: eyes are looking slightly more shaped like eyes !! possibly also meaning less swelling in that area.
-ears: still some wet inside, crusty. lot of room in there now.
-Face and ears: same grainy
-esophageal: burns, relieved by meal/meds
-L upper teeth: going to dentist. root canal in old previously dressed tooth. to be crowned next time. Is still irritable today.
-teeth: strongly affected by cold.
-chokey cough:
-chest pressure: occasional
-Diaphragmic/Gall area:
-gut herx:
-GI bloat. less often
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking: I 'feel like' I 'should' be able to stand to shower, but cant stand long enough. and walking is still a huge effort.
-shower: same
-affected by exertion - computer, phone etc.
-mentally: going carefully
still cannot read a book or magazine or play board games, listen to music, etc.
-Feet, ankles and lower legs: feet a little less swollen, but still big enuff.
-numb area on the L upper leg. same
-feet, toes: same re numbness.
-toenails: same, digging out. podiatrist came today.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: level of pain/difficulty changes between moderate to high..
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold:
-Bottom: symptoms increased again after small walking distance. + 1 bout of GI upset, following dentist outing.
-R flank/kidney area: can feel it. flared up on day 3 when mino dose due
Walked to front of house. very exhausting. Immunopathology flared to intolerable. extra Benicar and panadol and meds doses to calm IP. have to be patient. have to wait. cant make it happen.
Thank You All, and best wishes.. 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: | 19395 |
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Offline
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Posted: Sat Jul 12th, 2008 08:00 |
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Saturday 12th July.
MP meds:
Benicar 40mg Q6H
2nd abx: level 3. 1st dose
mino 100mg: Q24 to 50H
I always need to use the antibiotics to modulate immunopathology.
Other meds:
Insulin 8u/s Daily. blood sugars stable.
panadol: 1 or 2 per day. helps calm immunopathology.
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen: RUQ swelling.
-looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands, and some on forehead.
-Body stiffness and discomfort: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side. uncomfortable at rest.
-back: aches, and down R side at times of high immunopathology.
-hands and wrists painful. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers same
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles- higher level.
-tops of hands and forearms: same. grainy feel..
-dull headache: occasional
-eyes: same glazed and bloodshot.
-ears: still some wet inside, crusty.
-Face and ears: same grainy
-esophageal: burns, relieved by meal/meds
-swallowing: scary. mild occasional problems continues (forgot to report)
-L upper teeth: IP. root canal to be crowned Tuesday.
-teeth: strongly affected by cold. this is an old symptom resurfacing.
-chokey cough: occasional
-chest pressure: occasional
-Diaphragmic/Gall area: still extended
-gut herx: high level today
-GI bloat. less often
-GI more settled generally
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking: and walking is still a huge effort.
-shower: I stood in the shower x once and 'felt like' I 'should' be able to continue to, but cant yet. back to sitting. ahh well.
-affected by exertion - computer, phone etc.
-mentally: challenged at present. and can be emotionally fragile.
-Feet, ankles and lower legs: same
-numb area on the L upper leg. same
-feet, toes: same re numbness.
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: level of pain/difficulty moderate to high..
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold:
-Bottom: symptomatic. after that small walking distance: had 1 substantial bleed following.
-R flank/kidney area: moderate to high levels.
Thank You All, and best wishes.. AB
____________________
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: | 19395 |
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Posted: Mon Jul 28th, 2008 06:25 |
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Monday 28th July.
MP meds:
Benicar 40mg Q4 to 6H
2nd abx: level 4. 1st dose
mino 50mg: Q24H
I always need to use the antibiotics to modulate immunopathology.
Other meds:
Insulin (mixtard 30/70) 6u/s Daily. blood sugars stable.
panadol: approx 1 per day. mild headaches.
magnesium daily for legs/cramps
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen: RUQ swelling.
-looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands, and some on forehead.
-Body stiffness and discomfort: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side. uncomfortable at rest.
-back: aches, and down R side at times of high immunopathology.
-hands and wrists painful. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers same
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles- higher level.
-tops of hands and forearms: same. grainy feel. more grains.
-upper arms: both catch in the muscle when move or reach
-dull headache: occasional
-eyes: same glazed and bloodshot.
-ears: still some wet inside, crusty.
-Face and ears: same grainy
-esophageal: burns, relieved by meal/meds
-swallowing: choky coughing continues
-L upper teeth: IP. root canal now crowned.
-teeth: strongly affected by cold.
-chest pressure: + L arm occasional: sit up to relieve.
-Diaphragmic/Gall area
-gut herx - and 1 sore point either side
-GI bloat
-needle type jabs anywhere, any time.
-some antbite cramps, ribs and down arm area, when needing to take/increase meds
-subcutaneous ouch, esp legs
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking, standing.
-shower: sitting.
-affected by exertion - computer, phone etc.
-mentally challenged. the 'too much' syndrome in any challenging situation.
-Feet, ankles and lower legs: same
-numb area on the L upper leg. same
-legs -calves: jumpy and then cramp. taking magnesium
-feet, toes: same re numbness.
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: level of pain/difficulty moderate to high..
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold
-Bottom: can be sore
-R flank/kidney area
Thank You All, and best wishes.. AB
____________________
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: | 19395 |
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Posted: Tue Aug 5th, 2008 18:43 |
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Some ask How I am besides the symptoms that I list in my reports.
To look at this rationally, One would have to say I wasnt going to get any better by not doing MP. Pre MP, despite my best efforts for all of my Life and all the treatments I had tried and my positive attitude, I was not getting any better. I was losing the ability to do one more thing and one more thing as time went on.
I struggled for years to look and function, and to appear "normal" as much as possible. - unknown to others around me, who thought by listening to my positive attitude and my announcing when I "could" drive the car or go out, that I 'must' be getting better. They remember this, and they dont remember that I had had to stop attending Family and community. and are unaware of the fact that I wasnt capable of so much that they take for granted as normal. They cannot know that even my manic episodes of accomplishing so much were also in fact, a symptom of my illness. I was either 'flat out' or 'flat out'. They didnt see me when I was too ill to present.
My friends and family who are not in the MP world are concerned now because they are seeing how ill I am and for how long, because I have dropped the facade, and I have stepped away from 'obligation' and 'expectation' and I have put attending to my own health as the higher priority.
Those outside of my immediate Family, ie outside of my Husband, grown children, are sure that I should 'give up' this treatment - as if I will magically be ok if I wasnt on it, if I would 'go out and about' - that everything would go 'back to normal'.
I dont try to explain what the MP is, just that yes, I will be continuing. (the inference is how I cannot possibly know what I am doing, that I am not 'really sick', and that my poor husband has to continue to take care of me, and that I should /could be doing something useful.)
On the human side of me, of course I realise and so appreciate that I am lucky to have an understanding immediate Family, and I am loved and so well taken care of, but I am also still disappointed that I am swollen, heavy, stiff and sore, uncomfortable, that I am unable to live a 'normal' life, unable to do or enjoy many of the simplest things that many take for granted. I am disappointed that my Dr doesnt understand. In the cold light of this moment, it does seem neverending and hard to bear. and at the same time......
I couldnt keep going if I didnt have the support of those close to me and this MP community, with the hope that those who are recovering/recovered give us.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Julia
Board Staff
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Posted: Tue Aug 5th, 2008 19:36 |
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Dearest Barb, please take some crumb of comfort from the fact that your suffering has been turned into a great blessing to so many, many of us - where would we be if you weren't there for us? Your selfless dedication, and Meg's, and the rest of the team's, means we have an MP, and our health. May you soon know the normal life that you've helped to give to us.
Blessings, 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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3873 |
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Posted: Tue Aug 5th, 2008 20:50 |
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Progress is so difficult to see short term too. But I take heart in noticing that April's insulin was 15u/s daily (and that down from BID before) and now you have pared it further to 6u/s. Sometimes long-term perspectives are all that can matter because the daily snapshot is so fraught with subtle shifts at best.
Please thank your family for me, too, as their support for your involvement and care has impacted my life and my wellness journey.
Thank you ever so much, and never enough, my dearest Barb.--Janet
Posts: 19166
WOW!.. most of those helping others.
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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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Marber144
Member in Phase 2
| Joined: | Wed Mar 5th, 2008 |
| Location: | Connecticut USA |
| Posts: | 46 |
| Status: |
Online
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Posted: Tue Aug 5th, 2008 21:20 |
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Thank you Aussie Barb. I am relatively new to MP & I look for your posts or responses. You are always there to encourage each one. Thank you to the entire MP "staff"! And, of course to Dr Marshall. It is incredible that we ALL finally have a path to better health. No matter what label we come with.
Thank you Aussie Barb for your perseverence & wonderful spirit.  .....
As with all the Moderators, Advocates & Members who make up such a great support team, even when we come with our sometimes silly "beginner" questions. 
____________________
Lyme Hashimoto HTN DDD apnea depression brain-fog OA Bart Babs Erlich/ Synthroid Wellbutrin Cymbalta/ LoLux/D, 3/08: NoIRs, covered, Blue Lizard, Mucinex, limit outings. Mar08(Jul08)-25D14(20) 125D60(59) Beni:Jun29/08 Ph1:Jul20/08 Ph2:Aug28/08
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 561 |
| Status: |
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Posted: Tue Aug 5th, 2008 23:58 |
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Dearest Lady Barb, Thank you so much for allowing your discomfort to motivate you to be a comfort to others. Thank you for allowing us to see into your world enough that we can draw strength from your persistence. Thank you so much for listening to your heart and carrying on. You are a gem and much loved by us all. ~Joyful~
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Lyme Babs Bart - 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 - cal/mag lysine hydroxyzine valium - rarely leave house NoIRs cover up low lux home - 25D17 Jul08
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Deb Grabetz
Member in Phase 2
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Posted: Wed Aug 6th, 2008 04:49 |
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"I dont try to explain what the MP is, just that yes, I will be continuing. (the inference is how I cannot possibly know what I am doing, that I am not 'really sick', and that my poor husband has to continue to take care of me, and that I should /could be doing something useful.)"
Dearest Barb,
It seems those around us, who can't understand we are sick, only want us well, so they can feel better. I've never understood why anyone would think we would choose to be sick, it's such a lack of understanding. But then again being ill, takes us to another level of living, it takes us to a more significant place, where we become who we are from the experience, and hopefully benefit others in some way at the same time.
When I think of you Barb, I *see* this lovely lady who is suffering dearly and yet reaches out to others on a daily basis. It is obvious you reach out from a level that most do no posess, to help us all recover...It is your wish that we all regain our health...it is my wish that you also regain yours...Much love, 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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PaulT
Member in Phase 3
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 287 |
| Status: |
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Posted: Thu Aug 7th, 2008 00:02 |
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Barb
You are a very special hero to all of us who are following you. Following both your trailblazing efforts towards health and your always wise advice.
Hang in there - keep taking the babysteps to health and at the end of the day your friends and family will understand why you've done what you've done.
Paul
PS 122,610 Reads of this record of your progress - most of them helping others
____________________
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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IngeD
Advocate
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Posted: Fri Aug 8th, 2008 03:21 |
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My dearest Barb. You are an amazing absolute super hero in my eyes. Despite your low reserves of energy and the emotional drain you are under you manage to lovingly support so many of us. You find it such an effort to type a few words. Yet you will repeat yourself when we are too thick to get it! You ignore our whinges when our neuro herxed brains make us forget how ill you are and even those who lash out you continue to give sound advise to, even if they don't get it.
Thank you dear Barb for your constant support and for hanging in there. Your courage inspires and motivates. Your achievements are simply incredible. All my love and prayers. IngeD
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Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08) Valium NoIRs limited outings covered lo lux home Ph3
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natalie17
Board Staff
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Posted: Fri Aug 8th, 2008 03:34 |
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You're just great Barb... a hero. I haven't been active online the past few weeks because I've been functioning at a lower level than normal and I've been thinking of you. I know you are here helping out unless you are physically incapable of doing so... and you are functioning at a much lower level than I am. I can't say thank you enough for that.
I know I speak for many people on here when I say we would wish for your recovery before our own and I'm sure I've said that before - but it'll always be true.
I am glad you are no longer putting up a facade - it's tiring and those that matter understand. I'd rather people see me looking as bad as I feel. It makes them realise that this is serious.
You'll have my support for years to come... right through 'til when I start reading about your great improvements, which I know I will.
Much love xx
____________________
CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Jan07 25D<4.4| avoid light D, NoIRs, always indoors| Ph2-Feb08 | ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19395 |
| Status: |
Offline
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Posted: Wed Aug 13th, 2008 08:29 |
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Thank You All ..
Wednesday 13th August.
MP meds:
Benicar 40mg Q4 to 6H
2nd abx: level 4. 3rd dose
mino stopped and next abx # started 1st Aug: 1/4 QOD. now 7th dose
antibiotics used to modulate immunopathology.
Other meds:
Insulin (mixtard 30/70) 5 then 4 units Daily. decrease by 1 unit weekly as BSL is stable - actually stable at lower range this week.
panadol: very occasionally
magnesium occasionally for legs/cramps
Quercetin: once only
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen: RUQ swelling.
-abdominal hernia: I hold this firmly as I get out of bed, and it does seem to be less protruding on movement like this. hoping the muscles are healing.
-looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands, and some on forehead.
-Body stiffness and discomfort: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side. uncomfortable at rest.
-back: aches, and down R side at times of high immunopathology.
-hands and wrists painful. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers same
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles- higher level.
-tops of hands and forearms: same. grainy feel.
-upper arms: both catch in the muscle when move or reach
-eyes: same glazed and bloodshot.
-ears: still some wet inside, crusty. sore inside sometimes
-Face and ears: same grainy. itch.
-scalp: itch
-Hair: growing soft and curly
-esophageal: burns, relieved by meal/meds
-swallowing: choky coughing continues
-Diaphragmic/Gall area and down R side
-gut herx
-GI bloat off and on
-needle type jabs anywhere, any time.
-some antbite cramps, ribs and down arm area, when needing to take/increase meds
-subcutaneous ouch, esp legs
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking, standing.
-shower: sitting. very wearying and depressing each time as it is a firm reminder of my limitation.
-affected by exertion - computer, phone etc.
-mentally challenged. taking care. setting limits.
-Feet, ankles and lower legs: same
-numb area on the L upper leg. same
-legs -calves: occasional jumpy. taking magnesium
-feet, toes: same re numbness.
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: level of pain/difficulty moderate to high.. I make sure my legs/feet are well under me when I go to stand, to lessen the pressure on knees.
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold
-Bottom: occasionally sore
-R flank/kidney area
-level of activity/ability: computer, recliner chair, bedrest. unable to stand for a minute eg. was able to knit some last week, but not this week.
Throughout MP it has been a constant battle to keep meds suitably adjusted to manage the Immunopathology. Because there is no real lull in the symptoms at a dose level, they usually change/increase suddenly when I need to increase or change the meds. and it happens often. Many times I have taken an abx dose, only to find that it isnt enough and has to be increased asap to manage.
The Immunopathology seems to be showing some subtle signs of moving towards what should be expected, but not there yet.
I am thankful that the insulin has been able to be decreased weekly and blood sugar stay stable. down to 4 units daily now from 50 units daily when I came home from Hospital (Dec07). The Dr did say the steroid induced Diabetes should reverse. For this last 12 months I have been either weaning the steroid and then weaning the hormone Insulin.
While I can manage daily with full assistance and support, the long term inability to function 'normally', would not be bearable or considered tolerable without all support, the knowing this is the only way, and the mindset that this is for a greater purpose.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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carol
Advocate
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Posted: Thu Aug 14th, 2008 05:06 |
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Aussie Barb wrote: While I can manage daily with full assistance and support, the long term inability to function 'normally', would not be bearable or considered tolerable without all support, the knowing this is the only way, and the mindset that this is for a greater purpose.
Bless you, Barb, for working for the Greater Good.
Carol
____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19395 |
| Status: |
Offline
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Posted: Thu Aug 21st, 2008 15:51 |
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Thank You All ..
Friday 22nd August. how time flies.
MP meds:
Benicar 40mg Q4 to 6H
2nd abx: level 4. 4th dose
+ abx: 1/2 QOD. 4th dose due today.
antibiotics used to modulate immunopathology. see *
Other meds:
Insulin (mixtard 30/70) 3 then 2 units Daily. decrease by 1 unit weekly (a bit quicker this time) as BSL is stable - actually stable at lower range again this week.
panadol: very occasionally
magnesium occasionally for legs/cramps/spasms
Quercetin: about 3 times
Light exposure: tint, blinds and drapes over windows. no going out.
I wont reiterate - all the same symptoms as above.
-new: furry teeth IP
-I was pleased to read a Member report today: "inflammation in my arms / fingers is improving finally after 1 yr of being bad." It helps to be reminded that it is all going to get there one day.
I am a good way towards a year of that as well.
-and another member posted "glands in my neck which had been swollen for many, many years are not swollen anymore" .. oh good.. it is glands.. I am looking forward to that one as well.
If I sit too long at the computer, the herx/pressure builds in the gut and diaphragm - are painful, and I get very stiff, and I need to move away, take Benicar and stretch out for awhile to let it dissipate.
-feet highly pufft again: too much time at the computer is the only change in the last few days. solution: more reclinder, less computer.
-affecting pressure in chest when lying back.
When I get up from sitting down, I am being kinder to my knees by placing feet back under me and sort of rocking off my chair instead of 'lifting' up.
We have had Family to visit. very nice.
I managed to slip my foot forcefully into the wall in the shower.. very painful. Benicar 3H for 12H kept the pain and bruising minimal and has helped it to recover in record time.
* The Immunopathology still seems to be showing some subtle signs of moving towards that in the guidelines, as per meds schedules, even though not fully there yet. This change from having to use the antibiotics as totally modulatory makes me feel that now the 'real' MP can begin.
Thank You All, and best wishes.. AB
-Add: last insulin dose Thurs 21st Aug. almost exactly 1 year from start.
-today Saturday: BSL this am 5.9 stable
____________________
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: | 19395 |
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Offline
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Posted: Tue Aug 26th, 2008 16:55 |
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Wednesday 27th August, 2008
Insulin: I have been decreasing by 1 unit per week. When down to 4 units daily dose, the BSL decreased from in the 6s to in the 5s, so stopped the insulin last Thursday 21st August. BSLs staying in the 5s.
Dr visit yesterday:
Hb decreased. slight anemia. 113: low normal 115>
small increase in Cholesterol
ESR: still raised
mild renal impairment with associated hyperuricaemia
Creatinine: down from 166 to 145 (range 40 to 85)
eGFR: was 28 now 32 (range greater than 89)
urate: was .73, then .66, now .49 (range .15 to .45)
phosphate: was 1.75, now 1.60 (range .75 to 1.45)
HbA1c remains within target @ 6.
parathyroid normal.
retest all in 3 months.
BP: 94/72 P 84
I found out
that if you get a script for mino 100mg is caps.... no repeats
50mg mino is tabs.... get repeats..
Dr was more supportive, but with reserve.
and.... I was a little stronger this Drs trip than I have been before. 
Thank you to All who have supported me in getting thru to here! 
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dr Trevor Marshall
Research Team
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Posted: Tue Aug 26th, 2008 17:25 |
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"so stopped the insulin last Thursday 21st August"
"HbA1c remains within target @ 6"
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Adrianne
Member in Phase 3
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Posted: Tue Aug 26th, 2008 19:36 |
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Barb, what an encouraging report! My prayer is that this be the beginning of an upward trend for you and that one day soon all of your little improvements will add up to a state of overall health and vitality.
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl 25D<7(Mar08) NoIRs limited outings covered
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salam
Member in Phase 3
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Posted: Fri Aug 29th, 2008 22:29 |
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| glad to hear some good news about you Aussie. I read every post in your progress hoping to hear real good news. Wish you the best.
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Diagnosed with Early RA in March 2007. benicar Sep.07; ph1 Oct.07. Ph2 Dec.07. ph 3 Sep. 08.D-25 2.8 Nov 07;7.5 April,08.Less than 7.0 June 08; 9.5 Aug 08 (all in ng/ml).
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19395 |
| Status: |
Offline
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Posted: Wed Sep 10th, 2008 04:54 |
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Thank You All ..
Wednesday 10th September
MP meds:
Benicar 40mg Q4 to 6H
# abx: level 5. 3rd dose
+ abx: 1/2 QOD. 6th dose.
Other meds:
panadol: occasionally
magnesium approx once daily for leg flutters to prevent > cramps/spasms
Quercetin: occasionally to manage IP
Light exposure: tint, blinds and drapes over windows. no going out.
I wont reiterate - all the same symptoms as above. still falling asleep any time I am not consciously engaged in something.
feet mild puff.
I can see a hollow in my throat that I dont think was there before, and a small dent near the collarbones. this while still remaining entirely swollen.
Blood sugar levels remain stable. no insulin.
I am trying to drink more water. I have never been good at drinking water.
After Benicar, I used to use mino as a palliative. I am using the panadol, Q and magnesium more now.
I tried standing in the shower, but was unable to manage properly.
I walk (ie totter) once per day approx 18 yards/meters to the gate. I find it takes a lot out of me and especially when walking off the concrete, so I do that in order to use more muscles. trying to do any more than this gives me a sore bottom again.
Thank You All, and best wishes.. AB
I am feeling very impatient to be "able". not anxious, and it doesnt overtake me, just a druther.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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