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Aussie Barb
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Posted: Sat Sep 8th, 2007 20:05 |
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Thank you All.. 
Sunday September 9th 2am
Benicar 40mg Q2 to 3H as needed.
Tylenol (panadol) 1 Q4 -6H regularly
Dexa 2mg Q4H
Continuing on as above. Still feeling very ill and slow. the effect of the exfoliation can be described as similar to stirring toxins after having had a massage except I didnt have 'the massage.' the emotional fragility has passed so that would seem to be indicative of some progress. am nursing myself thru, taking care.
The Podiatrist visited yesterday and said my feet are looking the best she has seen them. so that is a plus. The R big toe op site had some ooze still that I was unaware of. I note that I can 'see' that my toes are inflamed.. but not necessarily 'feel' the amount of pain there should be.
[Neuropathy and paresthesic symptoms: new understandings dawning.
As immunopathology: Feet symptoms: I can feel that I have feeling coming into my feet. I hadnt known that the facts:
All of my Life:
I could stand on hot bitumen and rough gravel.. - didnt mean I was 'tough'. it meant I was ill. oops.
or that I (my hands) could wash up in hotter water than anyone else in the Family - didnt mean I was 'tough'.
or that I could swallow the hottest cup of tea.
(cannot do so now) all of these things are symptoms of returning sensation thru immunopathology.] IMPORTANT Note: ie to say the esophageal burning etc is neuropathy and is why it is helped by the benicar dosing.
other symptoms at present are teeth numbness / sensation also.
feet feel like they are in hottish or coldish water most of the time.
wakeful sleep 3.5H waking for meds. 12.30am up.
Notes:
extra fluid output continues.
and as always, usual symptoms as previously noted.
Thank you All  one moment at a time
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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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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Mon Sep 10th, 2007 01:26 |
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Thank you All..
Monday September 10th 7.30am
Benicar 40mg Q2 to 3H with + halves as needed.
Tylenol (panadol) 1 Q4 -6H regularly. forgot this yest and was wondering what was wrong, what was missing as symptoms escalated regardless of other meds.
Dexa 2mg Q4H
Very wakeful night. meds, up, meds, up, meds and up.
Notes:
extra fluid output and seemingly some wrinkle evidence of shrinkage continues.
There has to be a balance all thru to keep all functioning at possible optimum level.
The dexa has assisted metabolic function. (pre this little overdo hiccup since last Thursday)
and the benicar and panadol have had to be increased to assist with symptoms of the dexa increased organ function. a matter of balance.
Short visit from Family yesterday.
Continuing on as above. The ill is now lessening slowly, so there is improvement. The slow is continuing, and the body function still very slow. am taking care and meds. making sure of adequate hydration and nourishment and rest.
and as always, usual symptoms as previously noted.
gut immunopathology etc
Thank you All one moment at a time
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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: Mon Sep 10th, 2007 01:46 |
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Barb says All of my Life:
I could stand on hot bitumen and rough gravel didn't mean I was 'tough'. it meant I was ill. oops
The change of sensation in the skin is actually quite profound as one heals. I used to get extreme discomfort (opposite of Barb) when walking around barefoot, but now all of that has gone. Similarly, as others have reported, my super-sensitive hair suddenly became 'without feeling' at about year 2. No longer are barber shops to be feared
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Mon Sep 10th, 2007 20:50 |
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Thank you All..
Tuesday September 11th 3am
Benicar 40mg Q3H with + halves as needed.
Tylenol (panadol) 1 Q4 -6H regularly. forgot this yest and was wondering what was wrong, what was missing as symptoms escalated regardless of other meds.
Dexa 2mg Q4H. Will decrease dexa dose to 1.5mg and assess.
Very wakeful. Immunopathology just keeps coming. meds, meds and up to settle.
Notes:
extra fluid output and seemingly some wrinkle evidence of shrinkage continues.
Noticed a change yesterday afternoon to less Benicar and then increase again thru the night. Still would be considered intolerable and very slow and awkward. the body function still very slow. am taking care and meds. making sure of adequate hydration and nourishment and rest.
and as always, usual symptoms as previously noted.
gut immunopathology etc
aching lower legs, ankles.
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching teeth mouth
esophageal
eyes gummy
hot flushes transient
Thank you All one moment at a time
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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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anniemac48
Member in Phase 3
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Posted: Tue Sep 11th, 2007 01:31 |
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Hi Barb, just read your last few posts, WOW! your some kind of inspiration for living a day at a time, and you have been doing it so long, I guess you've got more to gain after been so sick. On top of all that you deal with us lot, some of us all over the place
THANK YOU
Warm Regards Annie
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RA 125D42 Ph1 Mar07 NoIRs Ph2 Jun07 25D7 Jan08
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Aussie Barb
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Posted: Tue Sep 11th, 2007 03:21 |
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More details re meds dosing adjustments:
Using the dexa involves finding the balance, managing the immunopathology, similarly to using the antibiotics.
One effect seems to be enabling better organ function.
This also seems to lead to increased immunopathology/inflammatory symptoms similarly to using the antibiotics, that require management, firstly by an increase in the benicar dosing and other palliatives, and then by decreasing the dexa again when it is time. - counterintuitively.
Observations:
Face looks better color. steroid flush. nice to see but of course a steroid flush.
organ function improved. fluid out and fast. start to feel a lift toward more tolerable. can feel the body is working hard.
need pain meds.
need all care, hydration, nourishment, rest.
extra high requirement of extra Benicar dosing to palliate the extra kidney/organ activity. as evidenced in all over body pain and back pain etc.
Next: the inflammatory symptoms are surpassing the ability of the Benicar to keep up and the high level immunopathology is 'powering in and on'. body function is decreasing with the typical increase in inflammation. as evidenced in back pain, full body pain, unable to sleep. etc. intolerable level.
decrease dexa dose from 2mg Q4H to 1.5mg dose now, and assess response.
Response in this first 2H since decrease of dexa dose has been a decrease in the inflammatory lower GI pressure and return of function.
Thank you All one moment at a time
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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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Morris W. Milnes
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Posted: Tue Sep 11th, 2007 08:02 |
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Glad to see the lift toward tolerable. Seem to be getting a little bit of that myself.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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Aussie Barb
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Posted: Tue Sep 11th, 2007 22:44 |
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More details re meds dosing adjustments: finding the balance.
Yesterday: suddenly very weak and shakey day. no amount of food, hydration, rest could help. intolerable and physically distressing.
Had decreased the dexa dose to 1.5mg and extended and it still felt too much, so went back to 1mg dose. still too much. I could feel it make me weak. felt the need of the antibiotics dose to stimulate an up response and organ/ body functionality, and to decrease the inflammatory symptoms. how much to take. not too much.
4.45pm took mino 25mg to assess response. a little response.
5.45pm: some small pickup. add 1/8 2nd abx
8.30pm 1mg dexa dose knocked me back again.
9.30pm took new combined dose of the low dose 2 abx to go to bed.
slept fitfully wakefully, assessing. This is right on the cusp of managing with the dexa and the antibiotics. using extra Benicar and panadol.
Today:
2.30am got up feeling less weakness. antibiotics are right at this time. Even a small amount of dexa is knocking me down now, and use the antibiotics to stimulate body function/ability again it seems is best. will assess dose schedule etc as it unfolds.
usual gut immunopathology etc tolerable enough level. always looking forward to lower level.
feet etc
lower GI pressure
Thank you All one moment at a time
add 5.30am 8H: weakness escalating despite benicar. took combined mino 25mg + 1/8 of 2nd abx. took time to pick up.
will assess re Q6H use.
10.45am: took abx combination med 5H+: cos feet ankles aching. esophageal increasing
Benicar 40mg Q3 to 6H
Panadol Q4 to 6H w 2 at night
weakness intolerable.
3pm: dexa 2mg dose
am realising that of course, I was affected by visitors. and that my body is working hard.Last edited on Wed Sep 12th, 2007 12:08 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 Sep 12th, 2007 21:35 |
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Thank you All..
Thursday September 13th 3.40am
Benicar 40mg Q2 to 3H with + halves as needed.
Tylenol (panadol) 1 Q4 -6H regularly.
no abx
Dexa 2mg Q4H.
Fitful sleep, assessing, mindful between wakes. Very wakeful. Immunopathology just keeps coming. meds, meds and up to eat, to settle.
Notes:
high level extra fluid output and seemingly some wrinkle evidence of shrinkage continues.
and as always, usual symptoms as previously noted.
gut immunopathology etc
eyes gummy
hot flushes transient. clammy.
strong aching knees, lower legs, ankles.
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching teeth mouth
esophageal burn (neuropathy) assisted by adjusting the Benicar and MP meds.
The neuropathic symptoms started in MP a very long time ago, as barely, 'I wonder what that is? are my feet hot or are they cold?'
burning esophagus? why etc..
The high level of neuropathic immunopathology is now the sign of actual healing in that:
I can feel feeling 'coming back' I didnt know was lost. that I didnt know I couldnt feel in these areas.
and eg. the R toe op wound is oozing but I cannot feel anything.
Weakness is less than yesterday. Intolerable and very slow and awkward. the body function still very slow. am taking care and meds. making sure of adequate hydration and nourishment and rest.
Thank you All one moment at a time
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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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B R H
Member in Phase 3
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Posted: Thu Sep 13th, 2007 00:30 |
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What hair?
My scalp is very sensitive when I get haircuts. I'm not sure, but I don't think this has always been the case. It sure seems to have gotten worse the past few years.
Is hair loss common in Th1 diseases?
Will the MP treat paresthesia and neuropathy? AB
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Lyme, babesiosis, hypothyroidism, asplenia, incomplete quadriplegia, 125D58 (11/06), 25D12 (01/08), Synthroid 75 ug qd, sunscreen & sunglasses outdoors as needed.
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Sep 13th, 2007 22:00 |
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Thank you All..
Friday September 14th 4am
Benicar 40mg Q2H.
Tylenol (panadol) 1 Q4 -6H regularly.
no abx
Dexa 2mg Q4H during the day yesterday and then to Q6H later, and now.
ADD: 4pm: restart Quercetin 250mg TID
Quercetin - was stopped Saturday August 25th to increase the dexa: have needed to use Q to keep all tolerable throughout MP.
Waking 2H for benicar. and then 2.30am dexa and up to eat, settle etc.
Notes:
high level extra fluid output continues and seemingly some wrinkle evidence of shrinkage continues.
and as always, usual symptoms as previously noted.
gut immunopathology etc
eyes gummy
hot flushes transient. clammy.
strong aching knees, lower legs, ankles.
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching, half numb teeth mouth
esophageal burn (neuropathy)
(noting that some biting of cheek occurred again after taking the abx doses couple of days ago)
The last couple of days have been my worst days for a very long time.
I have woken now feeling a little more recovered from there. thankfully.
I am taking care and meds. making sure of adequate hydration and nourishment and rest. DH has been very supportive and caring.
meds strategy is to find the balance. The Benicar dampens the active immunopathology to 'tolerable', and the dexa schedule is based on the inflammatory symptoms which the Benicar will not dampen. (lower GI pressure eg) still looking for/ managing for tolerable.
today: continuing very weak. intolerable. all management in place.
Thank you All one moment at a time
8pm: am responding positively to the first dose of Quercetin. has been helpful.
Last edited on Fri Sep 14th, 2007 13:54 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 Sep 15th, 2007 23:19 |
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Thank you All..
Sunday September 16th 5.30am
Benicar 40mg Q2 to 3H. prn halves etc.
Tylenol (panadol) 1 Q4 -6H regularly.
no abx
Dexa 2mg Q6H and have stretched a little if I can do. ankles eg begin to ache strongly. will explore a small decrease in dexa dose today and keep schedule.
Quercetin 250mg TID has made tongue sore (as it has in the past when I restarted it) hasnt made any noticable improvement to my very weak condition. continues.
Notes:
high level extra fluid output continues
sticky hands.
and as always, usual symptoms as previously noted.
gut immunopathology etc
eyes gummy
hot flushes transient. clammy.
strong aching knees, lower legs, ankles.
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching, half numb teeth mouth
esophageal burn (neuropathy)
all of these symptoms are managed to 'tolerable'.
I am taking care and meds. making sure of adequate hydration and nourishment and rest.
meds strategy is to find the balance. The Benicar dampens the active immunopathology to 'tolerable', and the dexa schedule is based on the inflammatory symptoms which the Benicar will not dampen. (lower GI pressure eg) still looking for/ managing for tolerable.
continuing very weak. intolerable. all management in place.
Thank you All one moment at a time
10am: update:
not taking Q today because tongue is sore
continue physically very weak
actual active immunopathology has settled and am using less Benicar to palliate today.
have decreased this dose of dexa to 1.75mg (from 2mg dose)
Making sure of adequate Benicar, pain control, rest, relaxation, and hydration, nourishment seems to be extremely important in helping to keep symptoms managed .. Rest is a very important part of managing and healing..
continuing very weak. intolerable. all meals have to be cut and put out for me. all management in place.
Last edited on Sun Sep 16th, 2007 14:19 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: Mon Sep 17th, 2007 21:15 |
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Thank you All..
Tuesday September 18th 3.30am
Benicar 40mg Q3 to 6H. prn halves etc. using less.
Tylenol (panadol) 1 Q4 -6H regularly. using less.
no abx
Dexa 1.75mg Q6H
No more Q: 1 day only of Quercetin 250mg TID made tongue sore
Notes:
sticky hands, face.
as always, usual symptoms as previously noted.
gut immunopathology etc
eyes gummy
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching, half numb teeth mouth
esophageal burn (neuropathy)
transient big toes ache mild
R big toe op - small ooze continues. keeping clean and w spirits to dry. can slightly feel the application of the spirits at the time is all.
all of these symptoms are managed to 'tolerable' and quite easily.
strong aching knees, lower legs, ankles. << strongest new recovery immunopathology symptom apart from extreme weakness.
Making sure of adequate rest, and hydration, regular nourishment seems to be extremely important in helping to keep symptoms managed .. Rest is a very important part of managing and healing..
continuing very weak. intolerable. all meals have to be cut and put out for me. all management in place.
Thank you All one moment at a time
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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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scooker48
Member in Phase 3
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Posted: Tue Sep 18th, 2007 01:11 |
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Barb,
To be sure, proper nourishment, rest, and hydration are very important on the road back to health.
It sounds like you have a good cook in the house...
All the best,
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 5/9/09 D25, D3 6; D25 D2 <4, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal.
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Aussie Barb
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Posted: Tue Sep 18th, 2007 22:28 |
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Thank you All..
Wednesday September 19th 4.30am
Benicar 40mg Q3 to 6H. prn halves etc.
Tylenol (panadol) 1 Q4 -6H regularly.
no abx
Dexa 1.75mg Q6H
as always, usual symptoms as previously noted.
sticky hands, face.
gut immunopathology etc strong
eyes gummy blurry
feet feel like they are in hottish or coldish water most of the time
toes, soles, numbish
aching, half numb teeth mouth
mouth, gums, tongue sore inflamed from regular eating etc.
esophageal burn (neuropathy)
R big toe op - small ooze continues. keeping clean and w spirits to dry. can slightly feel the application of the spirits at the time is all.
all of these symptoms are managed to 'tolerable'.
Note re decreased the dexa and this symptom has increased markedly.
It is strongest aching tightening in knees, lower legs, ankles through the night and is not easily dampened by using the meds, panadol nor the Benicar. I am forced to get up for relief. seems to be easier thru the day with periods of sitting. << is strongest new recovery immunopathology symptom apart from extreme weakness.
sore spot in R hip joint. have to be careful to 'place' correctly when walking.
also some backache again, as kidneys work it. is managed with the Benicar.
abdomen and full body: firm, uncomfortable to move, in bed or out.
have a mild 'sore spot' heart area.
Making sure of adequate rest, and hydration, regular nourishment seems to be extremely important in helping to keep symptoms managed .. Rest is a very important part of managing and healing..
continuing very weak. intolerable. all meals have to be cut and put out for me. all management in place.
Thank you All one moment at a time
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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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Deb Grabetz
Member in Phase 3
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Posted: Wed Sep 19th, 2007 03:50 |
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Hi Barb...That word intolerable tells me to send you a hug...Take care and thanks for all you do for us! Deb
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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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Posted: Wed Sep 19th, 2007 20:09 |
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Defining this part of the MP Journey for myself:
I feel to have been in a physical shock of sorts. in a place I havent been before. trying to assess what I have been feeling, trying to define the weakness, and where exactly is it. all the time, needing to rest and take care in high doses, and all the time the feelings changing, developing, and further defining for me.
I have been shocked by feeling of the power of the immune system. in awe.
Up to this point, I have not had real physical pain as part of the disease, and I think at this time, this is part of the learning about physical pain during the recovery.
The pain has been in the legs, and not always manifesting as actual pain that can be relieved. The difficulty has been in getting from A to B. or doing any more than sitting or resting.
The experience of the power of the immune system, as per an aura, gravity, awkwardness, heaviness, weakness, of shock and awe is shocking, unbelievable. incomprehensible.
The unfolding of the dexa medication management also adds to the what is happening now, and what to do next. I have taken abx again last night at 8pm. mino 25mg + 1/8 2nd abx. will assess further. is 2am Thursday now.
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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: Wed Sep 19th, 2007 22:02 |
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Indeed, the power of the immune system.
TeGenero produced a drug which was supposed to activate the immune system. It probably did its job quite well. They had tested it in primates (monkeys) as well as the usual mice and rats. But the human immune system was something else again....
"Calamitous Drug Trial"
http://www.guardian.co.uk/medicine/story/0,,1731920,00.html
"The drug trial that went wrong" - Video feature story
http://briandeer.com/tgn1412/tgn1412-film.htm
Now of course, if the investigators had only realized that Homo sapiens is living in symbiosis with a heavy load of Th1 pathogens, maybe this whole debacle might have been avoided
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Aussie Barb
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Posted: Wed Sep 19th, 2007 23:56 |
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6am: I have woken, rocking in my sleep, aching from the top of my head to the ends of my toes, confirming this is indeed the physical pain of recovery. Getting up, and taking Benicar settles the actual ache pain symptoms. so now all I have to do is continue to manage my meds etc.
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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: Thu Sep 20th, 2007 13:56 |
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The experience of the power of the immune system, as per a feeling of aura, gravity, awkwardness, heaviness, weakness, of shock and awe is shocking, unbelievable. incomprehensible.
I am not in pain. I am calm. To turn or move in bed is a huge effort. I have worked out if I dont do any thing I can manage.
I want to be thru this asap, but I can manage with full support. It is recovery thru high level immunopathology. ... 'all the lights turned on' ...I am using the Benicar 40mg Q3H, panadol Q6H, and the dexa 1.75mg Q6H.
Thank you All one moment at a time
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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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