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Aussie Barb
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Posted: Sat Apr 5th, 2008 21:47 |
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3am Sunday 6th April
MP meds: no sustained regular abx from July 1st 07
14th to 24th March 08 frequent mino to modulate bottom symptoms.
no antibiotics
Benicar 40mg Q4 to 5Hish with half s/l prn- approx Q2H.
Other meds:
Insulin 15u/s BID. blood sugars lowering, stable.
panadol: can help with level of immunopathology.
Q QID.
milk thistle BID
Light exposure: tint, blinds and drapes over windows. no going out.
Symptoms as per above post with these changes:
-skin: itchy. extra meds give relief.
-ears: settling with extra meds
-walking: I had been doing small amount of walking just on the path as I was able - dawn and after dusk, out of light. I noticed after pressure on bottom. used meds.
-range of motion: of arms and legs whilst on recliner. I noticed this also putting after pressure on bottom.
Friday 4th April: small blood loss again. stopped range of motion movements and walking.
Saturday 5th: After effects rising in evening and thru night. Immunopathology level increasing + body aching and sore bottom. mild headaches (usually from release of toxins) increased Benicar, Q, and panadol as needed to manage.
Sunday 6th: increased meds all day.
R middle fingernail had been inflamed again. professionally attended to, and the small ball of scar tissue present, was removed Saturday.
strange symptom: for a couple of weeks: smelling diesel fumes 24/7 and there are none around.
Edit Tuesday 8th April: I now realise that my trying to assist mobilisation by doing the small amount, albeit, my limit - has increased the immunopathology so, that I am still having to use the meds aggressively to manage.
I have to be very patient. I have found that any pushing to try to achieve more, either by extra movements or even the slightest massage of the smallest areas etc, pushes me past managing tolerable, and the meds cannot keep up.Last edited on Thu Apr 10th, 2008 23:35 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Wed Apr 16th, 2008 22:52 |
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4.30am Thursday 17th April
MP meds: no sustained regular abx from July 1st 07
Benicar 40mg Q4 to 6Hish with half s/l prn
Other meds:
Insulin 15u/s BID. blood sugars stable.
panadol: very occasional.
Q QID.
milk thistle BID
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen continues. LLQ and RUQ noticably more. -
-skin: graining etc. patches of dry. ITCH - shower and meds will assist relief.
-body/skin elasticity etc very badly damaged by disease -some skin changes- wrinkles - seeming to be puff decreasing?
-Body stiff and achy all over. debilitating.
-hands weak and sore - painful to bump. it is the bones in the hands..
-2 little fingers L hand: numb/pins and needles continues. difficult to close into fist.
-fingernails: ridges across -seem to be growing out ok now.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-eyes: blurry. still glazed to look at.
-ears settling. occasional wet. apply hydrogen peroxide 3% on cotton tip.
-Diaphragmic/Gall area: immunopathology. RUQ more swollen. use meds a/a
-hair loss: slowed /stopped. hair in a bad state- felt wiry, had it cut short to match the new hair growth. seems to be straight at the moment. My hair went straight after the traumatic birth of my 4th child as well. presumably body shock.
-Face and ears: still feels very grainy, like facemask. cannot wash off or peel it off. looks waxy.
-esophageal: burns, relieved by meal/meds
-small swallowing difficulties
-chokey cough: occasional
-Keep falling asleep when on recliner in front of television.
-weakness, walking: -walking only from A to B inside. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings. not concerned or depressed.
-showering myself, sitting down.
-affected by short term exertion - computer, phone etc.
-Feet and lower legs: are pufft. feet feel bulky underneath. look waxy.
-R upper leg: numb area on it funny feeling.
-numb area on the L upper leg. (old injury) electric jabs to one point there. must be nerve healing.
-lower legs and feet: thick skin not showing at present.
-skin on top of feet: inflammation resolving some.
-feet, toes: numb..
-big toe: occasional mild ache (high uric acid- gout)
-toenails: continue to grow into/under the skin on each side. lift them out daily or second daily to reduce incidence of inflammation.
-skin on seating area of backs of legs: dark rough skin
-knees pain: difficult and effort to get up from recliner eg.
-abdo and back muscles: immunopathology
-hot feeling electric jabs: anywhere.
-bottom discomfort: this symptom continues, using meds aggressively to manage.
-dizziness on lying down. taking care..
-sleep: 2H blocks maximum
chills: any time. either for no reason, or if emotional.
Using meds aggressively to manage, so no more 'exercise', as it exacerbates immunopathology. waiting patiently. one moment at a time.
Thank You All, and best wishes.. AB
Sunday Edit: I have previously noted the physical mobilisation as causing increased immunopathology. This week I overdid on the computer with the same effect. an increase to intolerable symptoms needing aggressive meds.
Last edited on Sun Apr 20th, 2008 01:24 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Sat Apr 26th, 2008 08:56 |
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3pm Saturday 26th April
MP meds: no sustained regular abx from July 1st 07
Benicar 40mg Q3 to 6Hish with half s/l prn]
My Immunopathology was too harsh with Benicar alone so I had to restart the antibiotics to modulate again.
Wednes 23rd April 10pm: started abx again: mino 50mg Q6H + added 2nd abx single dose Friday am to help hold the symptoms.
Other meds:
Insulin 15u/s BID. blood sugars stable.
panadol: occasional.
Q none
milk thistle none
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen. LLQ and RUQ noticably more. -
-skin: graining etc. patches of dry. ITCH - shower and meds assist relief.
-body/skin elasticity etc very badly damaged by disease -some skin changes- wrinkles - seeming to be puff decreasing?
-Body stiff and achy all over. debilitating.
-hands weak and sore - painful to bump. it is the bones in the hands.. R hand may be slightly improved.
-2 little fingers L hand: numb/pins and needles continues. seem to be slowly improving. difficult to close into fist.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-eyes: blurry. still glazed to look at.
-ears occasional wet. apply hydrogen peroxide 3% on cotton tip.
-Diaphragmic/Gall area: immunopathology. RUQ more swollen.
-Face and ears: still feels very grainy, like facemask. cannot wash off or peel it off. looks waxy.
-esophageal: burns, relieved by meal/meds
-chokey cough: occasional
-Keep falling asleep when on recliner in front of television.
-weakness, walking: -walking only from A to B inside. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings. not concerned or depressed.
-showering myself, sitting down.
-affected by short term exertion - computer, phone etc.
-Feet and lower legs: pufft. feet feel bulky underneath (paresthesia). look waxy.
-R upper leg: numb area on it funny feeling.
-numb area on the L upper leg. (old injury) electric jabs to one point there. must be nerve healing.
-lower legs and feet: some thickening of skin.
-skin on top of feet: inflammation resolving some.
-feet, toes: mild numb.. may be improving slightly
-toenails: continue to grow into/under the skin on each side. lift them out daily or second daily to reduce incidence of inflammation.
-skin on seating area of backs of legs: dark rough skin
-knees pain: difficult and effort to get up from recliner eg.
-abdo and back muscles: immunopathology
-hot feeling electric jabs: anywhere.
-dizziness on lying down: has resolved
-sleep: 2 to 3H blocks maximum
chills: any time. either for no reason, or if emotional.
-bottom discomfort: escalated to absolutely intolerable pain. small occasional blood loss. using meds aggressively wasnt helping, so started the abx. I am very tired and ill from the pain and discomfort, which are both slowly improving. one moment at a time.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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natalie17
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Posted: Sat Apr 26th, 2008 09:39 |
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Barb, your strength really does inspire more people than you know.
You pretty much have every active member on this site cheering for your full recovery, even if they don't all have the time to say it - I speak to so many people that talk about how much they admire your courage & still manage to offer us support despite the insane amount of extra IP & symptoms you endure than most of us.
Always reading your updates,
Best of wishes,
Natalie 
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CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, pretected when out | Ph2-Feb08 | ABCofMP
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Aussie Barb
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Posted: Sat May 3rd, 2008 11:16 |
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5pm Saturday 3rd May
At all times in MP, when using the antibiotics, besides using the Benicar as my first step, I have had to adjust the frequency/ increase/ change the antibiotics to modulate the immunopathology to tolerable. - sometimes having to change combinations after a very short time. I have never ramped thru phase one mino from 25mg Q48H to 100mg yet. I have always had to either add a 2nd antibiotic and/or take more frequent mino to achieve tolerable immunopathology.
My Immunopathology has been too harsh with Benicar alone so I had to restart the antibiotics to modulate again.
: re Hospitalisation: I have been having "day nightmares" /flashbacks about my being in hospital. I now realise that they were treating me as acutely ill only, and not knowing me previously, their expectations of my mobilisation came from this. It is now 5 months since I came home, and although improving slowly, I am still reliant on the home assist rails etc, and on personal assistance. I wonder why was I there for so long? and I realise that I came home as soon as I could hope to be able to get up out of the car and into the house with a walker and help.
MP meds: Benicar 40mg Q3 to 6Hish with half s/l prn
mino 50mg Q6H + 2nd abx same level.
Other meds:
Insulin 14u/s BID. blood sugars stable.
panadol: occasional.
Q once
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen. LLQ and RUQ noticably more.
-skin: graining etc. patches of dry. Itch is less - shower and meds assist relief.
-body/skin elasticity etc very badly damaged by disease -some skin changes- wrinkles - seeming to be puff decreasing? skin may be taking up some.
-Body stiff and achy all over. esp L shoulder, elbows, knees. debilitating - esp re dressing and general normal activities. waiting for this to go to be able to "live my life".
-hands weak and sore - painful to bump. it is the bones in the hands..
-2 little fingers L hand: numb/pins and needles continues. seem to be slowly improving. difficult to close into fist.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-eyes: blurry. still glazed to look at. prescription glasses are not right now, so will continue to wear the magnifying glasses until the healing process is further along and I may actually feel like having a check.
-ears occasional wet. apply hydrogen peroxide 3% on cotton tip.
-ears feel full. Right ear feels 'fuller'.
-Diaphragmic/Gall area: immunopathology. RUQ more swollen.
-gut herx: fairly heavy at times. use all meds to manage.
-Face and ears: still feels very grainy, like facemask. cannot wash off or peel it off. looks waxy.
-esophageal: burns, relieved by meal/meds
-hunger: increases with higher level immunopathology.
-chokey cough: occasional
-Keep falling asleep when on recliner in front of television.
-weakness, walking: -walking only from A to B inside. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings. not concerned or depressed. fragility.
-showering myself, sitting down.
-affected by short term exertion - computer, phone etc.
-Feet and lower legs: pufft. feet feel bulky underneath (paresthesia). look waxy.
-R upper leg: numb area on it funny feeling.
-numb area on the L upper leg. (old injury) electric jabs to one point there. must be nerve healing.
-lower legs and feet: some thickening of skin.
-skin on top of feet: inflammation resolving some.
-feet, toes: mild numb.. may be improving slightly
-toenails: continue to grow into/under the skin on each side. lift them out daily or second daily to reduce incidence of inflammation.
-skin on seating area of backs of legs: dark rough skin (like velcro): is resolving slowly.
-knees pain: difficult and effort to get up from recliner eg.
-abdo and back muscles: immunopathology
-hot feeling electric jabs: anywhere.
-sleep: 2 to 3H blocks maximum
-chills: any time. either for no reason, or if emotional. less.
-bottom discomfort: resolved, as long as I keep the meds up.
treadmill x 2 x 1 minute yesterday. cant do today.
The immunopathology has changed with the change of meds. At times it increases to where I have had to hang on till it passes. watching, waiting to see how many hours I need to have between mino doses, to see if I can extend, and how many days I can get thru in the cycle, to see if I can get there. I am getting there.
Changes: The abdominal swelling is lessening little by little. the skin seems to be taking up little by little.
: I am beginning to be able to see the outline of my knees and feel the bone on the outer sides.
: Bottom has finally settled. may it continue to be so.
: prescription glasses are not right now, so will continue to wear the magnifying glasses until the healing process is further along and I may actually feel like going out and having a check.
: I am a little brighter. it is more the stiffness and knee pain keeping me steady, although it doesnt take much exertion or interaction to set me back yet.
Thank You All, and best wishes.. AB
PS. I had my first 4H block of sleep tonight. (Saturday)
usually sleep 1 or 2H blocks any time.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Wed May 7th, 2008 07:42 |
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mid week post: includes April results. (desirable range in brackets)
Puff and weight have increased again since restarting antibiotics in May.
ESR has risen each test: Oct-17. Jan-30. April-37. (<21)
Cholesterol: 'good' C is up a little and 'bad' C is down some. is 6 (5.6)
Triglycerides: decreasing but still higher. 2.7.. (<1.5)
Liver enzymes have improved
Kidney function is declining further. (Dr remarked, but is ok yet- more tests in 3 months)
Urine cortisol: normal
Ferritin: 304 (15 - 220)
Folate and B12: normal
Hb: 115 (115-165)
Told Dr I havent been taking any of these meds since hospital: no comment.
Lipitor for the Cholesterol
Iron, B12, folic acid.
metformin for sugar
opremazole for reflux
HbA1c remains within target
Have decreased Insulin to 14 u/s once per day at the moment, from BID, and sugar stable
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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schesche
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Posted: Fri May 9th, 2008 04:44 |
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wow...i hope u get to the point soon where u can do the normall things again barb..
but i looks like u are more stable?
why were u in hospital so long..
head up killl them all chris
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CFS, Lyme/neuro,joint pain,brain fog, insomnia,rage 125D56, MP 10/07, Triazep, zolpid, bvi, NoIRs, low lux home, lite exp. r/t work, covered up, 25D16
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Aussie Barb
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Posted: Fri May 9th, 2008 05:14 |
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Thank you Chris
Restarting the antibiotics this time has settled the bleeding and pain suffered while on Benicar alone. I have to keep the meds adjusted to manage the immunopathology.
Why was I in hospital so long? my thoughts:
For myself, I was in hospital so long cos I wasnt mobile enough nor strong enough to get up out of the car to go home. I left hospital as soon as I thought I may be able. (with their grudging agreeance before they were ready for me to go)
For the Hospital, I was in cos they were sure as per daily blood tests, and other tests, scans, that, among other things, the gallbladder was a gall bladder that needed to come out. (They didnt know the symptoms were increased by Immunopathology from their 3 IV antibiotics and being in full light - natural and artificial). They did say it was a high risk op on me. And I wasnt going to have an op anyway, let alone with such high risk. >>>
And, they had no understanding that I was chronically ill, and wasnt going to get better any time soon like they expect in hospital. Thank you, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Wed May 14th, 2008 15:42 |
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9.30pm Wednesday 14th May
MP meds: Benicar 40mg Q6 to 8Hish and prn. if I leave it past 6H this time, I have to take it sooner next time.
2nd abx same level - 8 days.
(6th dose) mino 75mg Q30 to 36+Hish
that is as far apart as I can get the mino dose yet.
Last Wednes: Mino 50mgs was suddenly not modulatory, and I had to increase the dose to 75mgs to be effective.
Other meds:
Insulin 13u/s Daily only. blood sugars stable.
panadol: 1 tablet almost Q6H- tones down the mucus /cough/IBS.
Q none
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen: has increased since restart antibiotics. : (
-LLQ and RUQ noticably more.
-Body stiff and achy all over. debilitating - esp re dressing and general normal activities. waiting for this to go to be able to "live my life".
-hands and wrists weak and sore - painful to bump. in the bones. eg unable to pull the bed covers up or off.
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles continues. seem to be slowly improving. difficult to close into fist.
-R middle fingernail: some more hurt as it grows out.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-eyes: blurry. still glazed to look at.
-ears occasional wet. when meds are due. occasionally feel full. one or other ear feels 'fuller'. -are crusty- presumably some dried ooze. have much more room inside now. my sinuses have been stuffy forever and still are.
-Diaphragmic/Gall area: generally not as high level immunopathology. but increases to high level buildup when sitting at computer - have to lie flat to recoup.
RUQ more swollen.
-gut herx: at times. use meds to manage.
-GI sometimes bloat. pressure in bottom. passes. stays when it is time to increase meds.
-Face and ears: still feels very grainy.
-esophageal: burns, relieved by meal/meds
-L upper teeth: irritable increases with time to take meds.
-chokey cough: occasional. 1 tylenol helps.
-Keep falling asleep when on recliner in front of television.
-weakness, walking: -walking only from A to B inside. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings. not concerned or depressed most of the time. some grief and fragility when meds due etc.
-showering myself, sitting down.
-affected by short term exertion - computer, phone etc.
-Feet, ankles and lower legs: pufft. feet feel bulky underneath (paresthesia).
-R upper leg: numb area on it funny feeling.
-numb area on the L upper leg. (old injury) electric jabs to one point there. must be nerve healing.
-skin on top of feet: inflammation resolving some.
-feet, toes: mild numb.. may be improving slightly
-toenails: continue to grow into/under the skin on each side. lift them out less often to reduce incidence of inflammation.
-skin on seating area of backs of legs: dark rough skin (like velcro): is resolving slowly.
-some mild occasional gouty pain big toe and next toe.
-knees pain: difficult and effort to get up from recliner eg.
-hot feeling electric jabs: anywhere.
-sleep: 2 to 3H blocks maximum. sleep deeply when asleep. more restful/ less symptomatic thru the night in that I dont 'have to' get up- switch computer on/ take meds so much. I wake very stiff and sore.
-feeling the cold: I have never been one to feel the cold. have always been 'warm'. my kids used to be able to feel heat radiating off me..
-bottom: keeping the meds up.
treadmill: none yet.
-occasional dizziness again.
I feel like I am getting closer to what may be considered managing to tolerable immunopathology, with the exception of the heaviness, stiffness, and pain, of the body, which seems to just have to be worked with, till it is worked thru. I want it fixed yesterday. with good support I am able to be patient.
I am disappointed that the abdominal swelling increased since restart of the antibiotics. This increases the heaviness and body discomfort. The previous reduction was giving me hope. I guess the increase has to give me hope now.
Thank You All, and best wishes.. AB
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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expate
Member in Phase 3
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Posted: Sun May 18th, 2008 07:47 |
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You're my hero, um, heroine. 
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Aussie Barb
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Posted: Fri May 23rd, 2008 12:07 |
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6pm Friday 23rd May
(4th dose) mino 100mg Q30 to 36+Hish
2nd abx level 2. dose #1
Benicar 40g + 20mg s/l all together last night for headache.
Other meds:
Insulin 12u/s Daily only. blood sugars stable. came home from hospital in Dec on 25u/s BID and have gradually decreased.
panadol: for headache
Light exposure: tint, blinds and drapes over windows. no going out.
-Hair: is growing. starting to show it will be wavy again.
-Full body heaviness and swollen: -LLQ and RUQ noticably more. LLQ may be a hernia. noticed January.
-Body stiffness: I can reach a little better. shoulders sore.
-hands and wrists weak and sore - painful to bump. in the bones. may be some slight improvement. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers very noticable
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles seem to be slowly improving.
-tops of hands and forearms: same. grainy feel..
-eyes: blurry. glazed, bloodshot. same.
-ears: some improvement. have white flaky, waxy ooze which dries to crust.
-Face and ears: still feels very grainy.
-esophageal: burns, relieved by meal/meds
-L upper teeth: same. going to dentist.
-chokey cough: occasional.
-nose: New: uncomfortably dry. ?same as ears.
-chest pressure: (forget to report) increases when reclined. have to sit up.
-Diaphragmic/Gall area: moderate level immunopathology. RUQ more swollen.
-gut herx: high level at times.
-GI bloat. pressure in bottom. daily. passes later.
-urine: has been clear like water for a long time. now has good color. presumably improved kidney function.
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at most.
-occasional post hospital traumatic flashbacks.
-weakness, walking: -walking only from A to B inside. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings. looking forward to getting moving.
-showering myself, sitting down.
-affected by short term exertion - computer, phone etc.
-Feet, ankles and lower legs: less pufft. feet feel bulky underneath (paresthesia).
-numb area on the L upper leg. (old injury) electric jabs to one point there. must be nerve healing. jabs have changed to being a finer needle now : )
-feet, toes: mild numb.. may be improving slightly
-toenails: inflamed less often. this is the first podiatrist visit that I havent been urgently waiting for her. and she had to postpone the appt an extra week. (usually 6 weeks)
-skin on seating area of backs of legs: dark rough skin (like velcro): is resolving slowly. stings some.
-knees pain: may have been slightly easier. now increased.
-hot feeling electric jabs: anywhere.
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep. more restful/ less symptomatic thru the night in that I dont 'have to' get up- switch computer on/ take meds.
-feeling the cold:
-Bottom: is easily upset. had some soreness and one bleed this cycle.
I am managing to tolerable immunopathology with the exception of the overall heaviness, stiffness, and discomfort of the body. I am lucky to have good care and support.
Thank You All, and best wishes.. AB
Edit: Sunday 25th May: high level kidney immunopathology surprise. pain from R kidney to groin and down R leg. dysuria. increased Benicar + took 2 panadol + heat. no relief. took mino 50mg w relief of all.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Wed May 28th, 2008 22:01 |
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Noting ability level for future reference: all done slowly and carefully.
I have been waiting to feel better to make a dental appointment since the last dental appointment 2 years ago when I didnt cope so well with the outing, no work done. The teeth with some temp fillings are needing to be attended to. yesterday I went for the first appointment, and have been able to note.
-Still have to get dressed in stages. with assistance. 2 items of clothing at a time is enough, and then rest.
-fingers are too sore at present to pull clothes into place.
-feet not as pufft
-walking to car is more stable. I managed 'walking' in to dentist, and then to chair.
-getting into/out of car: I was able to slowly carefully lift my own feet, one at a time, in and out with minimal assistance this time.
-I was able to raise myself up and out of car using the car as leverage.
-I managed 45 mins in the chair. physically, emotionally.
-I was really exhausted, but was feeling more recovered after 7H at home. Benicar Q4H and mino 50mg Q6H to assist.
Mobile home hairdresser also came: had to trim the small amount of longer hair that was left after the hair loss. my hair is growing back "soft like baby's hair" says hairdresser. is very short, but strong.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Thu Jun 5th, 2008 22:05 |
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4am Friday 6th June
2nd abx level 3. 2nd dose
1st dose of mino 100mg after 4 doses 75mg. taking mino Q12H or daily.
Benicar 40g Q6H (Q4H when going to dentist)
Other meds:
Insulin 12u/s Daily. blood sugars stable.
panadol: for headache and body pain.
Noting another Dental appointment yesterday afternoon, for a root canal (started 4 years ago). another 45 minutes in chair. to be completed at another apptmt.
-Full body heaviness and swollen and pain: -RUQ may be slightly decreased with generally milder immunopathology there.
-other symptoms: no other changes to report from last.
-The all over stiffness and soreness has been higher level....
and after this dental, is very high level.
-I noted in the outside light that my fingernails have vertical ridges along with the horizontal ridges since my hospitalisation. No doubt they will all grow out.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Sat Jun 14th, 2008 10:40 |
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Just for my own interest: from my progress report June 13th 6.30am 2005: 3 years ago almost to the day.
I had a dream last night which I saw as symbolic of my MP Journey .. I was in the middle of nowhere, and even the 1 local resident/s couldnt tell me / were sort of mute about where we were / which way to go to get 'home'. Some of the time I had a travelling companion. and I went and went, around fully paved and wriggly curves and up and down slopes, and all thru this huge, miles long empty house, which had a picture denoting foreign soldiers habitation. sometimes see people I knew, which was a comfort to me, but still not knowing if I was 'getting there'..and then I came to a small town and was looking for signs to see the name of it and couldnt find, and the *important man* turned away and wouldnt say the name. I met these men there whose name was all Ungst.. (!) They said I had a strong handshake, and 1 of them in particular befriended me.. but I had to get on my way.. he gave me a gift. symbolic again. As I left there, there was a huge jampacked herd of cattle.. and 1 dead that I could see between these 2 towering walls of rock... these I took to be the bacteria that would not be able to continue surviving in those conditions..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Dr Trevor Marshall
Research Team
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Posted: Sat Jun 14th, 2008 11:19 |
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Dreaming is one of the things which came back as I recovered. I hadn't really noticed their absence, until the dreams 'just' came back
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medaesth
Member in Phase 2
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Posted: Sat Jun 14th, 2008 11:22 |
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Hi Barb,
I think you had the right idea on your dream. I am a big believer in dreams and their value in our lives. At one point in my life I did journaling of my dreams and it was very revealing as to what was happening at that time and helped me with decisions I needed to make. I feel these dreams are very healing when we look at them and see what they are trying to tell us. Keep up the good work !!!
I am so glad you are doing better. You stay in my thoughts and prayers.
Love, Pat
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Pat: OA, FM, Osteopenia, MVP, Cervical radiculopathy, 125D,76 MP 3/07, Ph2: 9/3/08, Effexor,Estrodial,Valium,HydrocoAPA325, Flexeril, NoIRs, low lux home, limited outings covered up. new D25 result=4. 9/1/09
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Deb Grabetz
Member in Phase 3
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Posted: Sat Jun 14th, 2008 14:36 |
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Hi Barb,
Your dream post was interesting and I'm glad to see you were killing bacteria in your dream! Yeah for Barb! Thanks for sharing a different take on what happens as we are healing...I hadn't thought too much about dreaming myself, other than I haven't had dreams for many years...and they have come back for me also. A friend bought me a journal to jot down my dreams as they were something new and exciting and I was always sharing them with her...nice thing for me, they have always been very pleasant dreams!
Feel good my friend...Deb You are very special! 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Jun 16th, 2008 01:11 |
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7am Monday 16th June
11 days mino 100mg Q36 to 40Hish to hold IP.
2nd abx level 3. 3 doses short cycles. new cycle unusually going full 10 days.
Benicar 40mg Q5 to 6H (no more s/l since May 23rd)
There is a change in that I have been able to stay at same antibiotics dose level without being pushed by intolerable symptoms to increase for modulation. ie immunopathology moving towards more 'normal'.
Other meds:
Insulin 11u/s Daily only. blood sugars stable.
panadol: for headache or body pain. 1 or 2 per day.
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen:
-diaphragm and mid remain full and firm.
change: RUQ swelling may be slightly less.
there is some slight looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands.
-Body stiffness: 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.. more grains.
-eyes: same.
-ears: same
-Face and ears: same
-nose: same
-esophageal: burns, relieved by meal/meds
-L upper teeth: settling some. going to dentist.
-chokey cough: occasional. + mucus when cry or laugh (all my adult life)
lungs seem to involuntarily suck in at any time and can make me choke on saliva or anything in my mouth at the time.
-chest pressure: sit up when it happens.
-Diaphragmic/Gall area: managed to moderate level immunopathology.
-gut herx: high level at times.
-GI bloat. each night: helped by small yogurt
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking: -same
-shower: same
-affected by exertion - computer, phone etc.
-emotional fragility: daily
-Feet, ankles and lower legs: same
-numb area on the L upper leg. (old injury) there is a change of sensation, but still numb. electric jabs a little less : )
-feet, toes: same
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: still high level of difficulty.
-some hot feeling electric jabs: anywhere.
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold:
-Bottom: no symptoms
Immunopathology: managing with less meds intervention / adjustments. seems unusual.
symptoms/meds changes are good. When I start to feel any better will be more helpful. watching and waiting.
Overall heaviness, stiffness, and discomfort, pain continues.
good care and support.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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RevDennis
Member in Phase 3
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Posted: Mon Jun 16th, 2008 16:32 |
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Barb,
You are my hero. Through all of the trials and pain, you are stead fast. I continually pray for you. Hang in there Lady.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Wed Jun 25th, 2008 08:59 |
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Wednesday 25th June.
MP meds:
Benicar 40mg Q6H
Prev last 2nd abx: 18 days
Prev last mino 100mg: 9 days
was able to manage w Benicar only
Tuesday: yesterday:
Benicar 40mg Q3 to 6H
mino 100mg - no relief
took low dose 2nd abx - relief
24H today: mino 100mg
Other meds:
Insulin 10u/s Daily. blood sugars stable.
panadol: occasional.
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen:
-diaphragm and mid remain full and firm.
change: RUQ swelling may be slightly less.
-noticed more looseness in the skin of swollen abdo and legs, and very slight wrinkles in skin on swollen fingers and hands.
-Body stiffness: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side.
-back: aches, and down R side at times of high immunopathology. see new pain
-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.. more grains.
-muscle in R upper arm 'pulls' when I reach.
-eyes: same.
-ears: same
-Face and ears: same
-nose: same
-esophageal: burns, relieved by meal/meds
-L upper teeth: settling some. going to dentist.
-teeth: affected by cold. this symptom has returned after being gone for some time.
-chokey cough: occasional. same
-chest pressure: less since last post
-Diaphragmic/Gall area: increased level immunopathology.
-gut herx: same
-GI bloat. may be less
-Keep falling asleep when on recliner in front of television. can sit thru about half hour at a time at very most.
-weakness, walking: very slight more able
-shower: same
-affected by exertion - computer, phone etc. fragile.
-emotional fragility: daily
-mentally: need a break.
still cannot read a book or magazine or play board games, listen to music, etc.
-Feet, ankles and lower legs: ankle bones are now visible at times
-numb area on the L upper leg. same
-feet, toes: same re numbness. feet a little less swollen
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: level of difficulty has improved sometimes.
-some hot feeling electric jabs: anywhere.
-sleep: night: 2 to 3H blocks with a 4H block maximum. sleep deeply when asleep day or night.
-feeling the cold:
-Bottom: symptoms again increasing 2 days ago. abx taken yest - relief
same day: cramps starting down fronts of legs. often a sign for me that I need abx. gone since abx.
New pain: Yesterday: started off in R gall/liver area- pulsing. moved to R flank/kidney where, despite extra frequent Benicar 40mg doses + panadol it continued intolerable. took mino 50mg, another 50mg, and then the low dose 2nd abx to assess if enough.. began to settle, with keeping extra warm. starting to niggle again now so took mino 100mg again.
Thank You All, and best wishes.. AB
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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