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Deb L
Member in Phase 3
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Posted: Sat Feb 3rd, 2007 06:46 |
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Bless you Barb hang in there, on toe at a time!
Hugs Deb
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RA Ph1Oct06 ModPh2Nov06 Ph2Feb06 Ph3Jan07 25D15.2(Jan09) D2518(May07) 25D22.5(Dec07) clonazepam Advil Noirs progesterone, estrogen
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Aussie Barb
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Posted: Sat Feb 3rd, 2007 22:07 |
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Sunday February 4th 8am
Benicar 40mg Q4-6H -half tablets prn inbetween. chewing and swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 2 per day as required.
3 abx combination as needed: : level 2, cycle 4, day 4:
mino 50mg + 3/4 3rd abx as needed: last night 11.30pm usually daily
level .25
using meds as above to manage symptoms.
cough wheeze when meds are due
burning when meds are due
seat hurts on office chair (dont remember to report)
skin on feet is always dry.. on legs has improved.
had some galloping tics in L calf yest afternoon
feet ache
diaphragm
full body continues to be affected
eyes
headache last night - first in a long time. had watched some DVD perhaps.
warm pack around neck/throat (?glands) and top of head helped.. + panadol.
one moment at a time 
today:
High level immune response - used the most Benicar in one day I have ever used I think. lifted in the evening.. relief.
gut stasis
falling asleep all the time.
burning symptoms
mino 50mg + 3/4 3rd abx 8pm
Monday Day 5
slept 4H.
lower legs aching
eyes mattery
pufft/ swelling continues.. keeps me inflexible etc..
gut - body
high level inmmune response
using meds as above to manage symptoms.
mino 50mg + 3/4 3rd abx 2pm w relief
level .25
back pain below R scapula.. panadol and deep massage to area helped.
sore area R calf
L top teeth hurting tongue
slept between wakes for meds
Tuesday Day 6
woke with broken back feel.. ok after Benicar and sitting up..
immune response less earlier in the morning and then revved up to high level in cesarean area.. and diaphragm.
back ache
aching all over
symptoms as above posts
no coughing wheezing today
less burning till 30+H
hung in and made it past the 24H without taking the abx
mino 50mg + 3/4 3rd abx 11pm
Wednesday new cycle Day 1
slept well 5H
woke with broken back feel and room spin.. took care.. Benicar panadol..
level .25 - settled
mino 50mg + 3/4 3rd abx 11am for high level gut and diaphragm response
today burning increased... level 2..
feet pufft down a little today.
room spin at times.
sore naso pharyngeal
tired day
have made it to day 7 so far this cycle.
Thursday Day 2
slept 5H
room spins when lying down or moving. is worse if eyes shut or not focussed. taking care. ack...
feet pufft is further reduced
doughy
Last edited on Wed Feb 7th, 2007 22:58 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: Thu Feb 8th, 2007 00:51 |
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Thursday February 8th 11am
Benicar 40mg Q4-6H -half tablets prn inbetween. chewing and swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 2 per day as required.
3 abx combination as needed: : level 2, cycle 5, day 2:
mino 50mg + 3/4 3rd abx as needed: 11am today usually daily
level .25
using meds as above to manage symptoms.
slept 5H
cough wheeze transient
esophageal burn when meds are due
burning is some settled
seat hurts on office chair
skin on feet is always dry..
skin on legs dry in patches.
feet and lower legs ache
diaphragm - also had galloping tic in L side yest
gut is slow - pressure > meds..
pelvic - cesarian
full body continues to be affected
neck pain - panadol relieves
eyes
L top teeth hurting tongue (less)
room spins when lying down or moving. is worse if eyes shut or not focussed. taking care. ack...
doughy, tired, resting ...
changes:
feet pufft is a little further reduced - 2nd day
can wash myself a little in the shower but knocks me around.. short of breath, groaning, exhausted.
one moment at a 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: Thu Feb 8th, 2007 23:31 |
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Friday February 9th day 3:
room spins continue when move head. taking care. ack...
doughy, tired, resting ...
L ear wet
other details as per above post..
change:
feet pufft is a little further reduced - 3rd day
one moment at a time
4pm:
Today is the first day I can recall having 'cruised' past the 24H mark without heading for intolerable gut symptoms requiring the abx.. is 5H past so far.
I am dead tired and have the room spins but no intolerable gut.. !
the meds make no difference to the spinning.
L ear clog, wet - a bit sore.. mino 50mg + 3/4 3rd abx
level .25
Saturday day 4
slept well between wakes for meds
ear needs meds to stay ok..
gut - high level immune response
dead tired continues
room spin may be slightly better so far today
feet still some pufft
5.30pm: mino 50mg + 3/4 3rd abx
level .25
keep forgetting to report - hair seems to have thinned recently
Sunday day 5
wakeful and hot thru the night.. symptoms are building towards having to increase a med..
esophageal burning keeping me out of bed from 1.30am
L top teeth hurting my tongue is another one of those..
muscle spasms catching..
backache
wheeziness
L ear wet irritable
burning
I find myself hesitating before the leap so to speak.. I use all the support meds first.. going thru them one at a time to make sure... and then, always trying to take the lesser dose and hoping that I can get away with it..
however, the symptoms do dictate.. if the dose isnt enough the intolerable symptoms keep on going till I take the extra. that quiets those symptoms and the ensuing high level immune response is easier to bear and to manage.
7.15pm: gut stasis: took mino 50mg + 3/4 3rd abx + a full Benicar at 3H. not enough. add mino 25mg.
level .25
Monday Day 6
slept better last night with increase of meds
L ear is wet and sore inside
eyes are sticky, bloodshot, black rings, are fairly closed/not very open ever.
feet ankles me still pufft
lower legs ache
back, L side aches
R big toe is starting to pulse.. uh oh..
immune response - quiet today in terms of my being more tired
and gut / diaphragmic immune response tolerable and just revving up higher 10pm
am taking less panadol recently.
10pm: took mino 75mg + 3/4 3rd abx + benicar at 4H to go to bed.
Tuesday day 7!
slept 4H and got up 3.30am
some woozy
some shakey
some wheezy cough
resting
Backache
body stiff and sore (taking panadol)
pufft
2pm: gut diaphragmic immune response is revving up. have taken all meds.
took mino 75mg + 3/4 3rd abx
level .25
Wednesday Day 8! becomes Day 1.
slept.. dreaming..
I felt that I may have started shedding some of the fluid I have been carrying, and measured... I have lost an incredible 6 inches in the last 6 weeks.Last edited on Tue Feb 13th, 2007 21:24 by Aussie Barb
____________________
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 Feb 10th, 2007 20:16 |
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List of Progress so far:
Came to MP on
methylcobalamin B12 injections
Thyroxine med
Natural Progesterone oral spray
> required to regulate body function/ symptoms and manage depression
with a life of migraines headaches:
had been on preventive med propranolol and sumaptriptan (imigran). stopped meds to begin MP
no more headaches from start of Benicar.
off B12 not sure when
Sept05 off Thyroxine
Feb 06 off Natural Progesterone spray
: able to stop these meds and use the MP meds and Quercetin to manage all emotional symptoms.
was taking probiotics from start of MP till Aug 06
have taken Milk Thistle sometimes for R upper quadrant pain
stopped end November 06
Neuro symptoms of numbness /sensitivity: have gradually been showing improvement.
can now eat cold food/fruit from refrigerator.
January 11th 2007
a couple of times - briefly -transient - the immune response felt 'lighter', less burdensome. a bit of peace is so sweet.. otherwise I remain disabled. still requiring intense meds management.
Friday January 19th
can see ankles for the first time in a very long time..
they were pufft again after being out of bed for 4H, but it is a start.
Sunday January 21st
knuckle bones just peeking thru this morning (when I make a fist)
Tuesday January 23rd
I am walking no further but notice I am walking a little more normally and there is a little less back and legs pressure.
Thursday February 1st
sudden change to not liking milk in tea.
Thursday February 8th
feet pufft is a little further reduced - 2nd day
can wash myself a little in the shower but knocks me around.. short of breath, groaning, exhausted.
Friday February 9th
feet pufft is a little further reduced - 3rd day
gut - first day I can recall having a brief period of no gut discomfort.
High level immune response continues - is very wearying - managed by MP meds as posted..
Wednesday February 14th
I felt that I may have started shedding some of the fluid I have been carrying, and measured... I have lost an incredible 6 inches in the last 6 weeks.
February 19th
shedding fluid: another 2 inches have gone at last measure. it may fluctuate.. dont know yet. can see a crease where my R foot joins leg where swelling has gone down some.
I have also noted a change in my thinking..
Up till now I have not had the ability to enjoy Life outside of obligations etc.. As hard as I would try, I have had no comprehension of what healing might mean to me. Recently, when seeing something on television, I have noticed myself thinking, "I would like to go there".. that is completely new for me.
one moment at a time immunopathology = healing
____________________
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: Tue Feb 13th, 2007 21:38 |
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Happy Valentines Day!!!
Wednesday February 14th 8am
Benicar 40mg Q4-6H -half tablets prn inbetween. chewing and swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 2 per day as required.
3 abx combination as needed: : level 2, cycle 6, day 1:
mino 75mg + 3/4 3rd abx as needed: usually daily
level .25
using meds as above to manage symptoms.
slept dreaming.
note: 5H is the most I ever sleep.
I do have a nap sometimes.
mucus cough wheeze so had to begin the new cycle.
some ribs muscle spasm
esophageal burn when meds are due
burning is settled
feet and lower legs ache
diaphragm
gut
pelvic - cesarian
full body continues to be affected
neck pain - panadol relieves
eyes
pufft
room spins are less
change:
I felt that I may have started shedding some of the fluid I have been carrying, and measured... I have lost an incredible 6 inches in the last 6 weeks.
one moment at a time
Thursday day 2
slept 5H dreaming
woke with esophageal burning, gut stasis, burning.
6am took mino 75mg + 3/4 3rd abx
nausea
esophageal burning taking some time to resolve
hanging out for an 8 day cycle was just too much of a push. taking too long to pick up again.
gut immune response..
some pain in arms
R big toe - can feel it all the time.. is building
other side of same toe is playing up so Podiatrist visiting tonight 7.30pm to cut out..
all attended to and toe feeling fine.
11pm: gut stasis
mino 75mg + 3/4 3rd abx
level .25
Friday Day 3
slept well 4+H
gut diaphragm immune response
backache
knees, lower legs and feet ache
eyes as always
New batch of Benicar started..
hanging out for an 8 day cycle was just too much of a push. taking too long to pick up again.
brain not home. cannot be bothered to eat which doesnt help. (DH away)
gut stasis: level .25 relief
falling asleep sitting up then cannot sleep when go to bed
Saturday day 4
12.30am out of bed posting.
esophageal burn
burning
1am: starting to pick up. will go to bed soon.
slept 4H
may be adjusting to new Benicar also
change to abx dosing happening: observing to see what happens
Thursday 11pm: was the last mino 75mg + 3/4 3rd abx: has now gone past 36H
immune response has me able to hang in. high level but not intolerable in sedentary circumstances.
esophageal burn
Backache
and gut response high level
gut pressure comes and goes with meds due..
back thru upper leg pressure when standing.
can wash myself a little more easily today - may be related to the fluid decrease.
Gut stasis bloating
6pm: 43H since last dose: took mino 75mg + 3/4 3rd abx
8pm: it took 2H to give relief.
esophageal burning - level .25 relief
Sunday Day 5
slept well
woke with broken back feel..
gut pressure rise.. take Benicar.
immune response gut
physically miserable gut
used all meds
start level 3 cycle 1, day 1.
mino 25mg + 1/4 of 3rd abx 8.30pm
Last edited on Sun Feb 18th, 2007 10:40 by Aussie Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Toni D
Moderator
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Posted: Wed Feb 14th, 2007 09:14 |
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Barb,
The Valentine flowers are beautiful, but your beauty far surpasses them. Congratulations on the six inches
Feel good and have a blessed day.
____________________
DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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eClaire
Member in Phase 2
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| Location: | Virginia USA |
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Posted: Thu Feb 15th, 2007 01:46 |
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Barb,
It sounds like you are really beginning to note progress; may your improvements become more evident with each passing day. You are an inspiration to many.
Claire
____________________
34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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SherryH
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Posted: Thu Feb 15th, 2007 04:20 |
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Barb,
Thanks for posting the list of all the little improvements you have noted! It was encouraging to me to read those and I hope for you as well. Please know that you remain in my thoughts and prayers for speedy healing, tolerable herxing and the feel of so many others who are cheering for you and encouraging you!
Sherry
____________________
Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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Aussie Barb
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Posted: Sun Feb 18th, 2007 20:28 |
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Thank You All ....
Monday February 19th 6.30am
Benicar 40mg Q4-6H -half tablets prn inbetween. chewing and swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 2 per day as required.
3 abx combination as needed: : level 3, cycle 1, day 1:
decreased these 2 to assess increase in other: mino 25mg + 1/4 3rd abx as needed: usually daily. 8.30pm Sunday
mino 50mg 7am today re esophageal
mino 50mg + 1/4 3rd abx 1pm re increase required
level .25 daily
using meds as above to manage symptoms.
slept 5H. 2 wakes.
symptoms listed have been difficult - I seem to sink into oblivion when it is time to increase. grrr.. began new cycle of increased level- seems better this morning.
unrelenting gut stasis and esophageal burning are the deciding factor..
and burning
some mucus cough wheeze.
some ribs muscle spasm
feet and lower legs ache
pufft increased
usuals are
eyes
L ear mild
ears and scalp itch
esophageal when meds are due
gut diaphragm
back
subcutaneous ouch
physically and mentally wearying.
Note for future reference:
having a shower and getting dressed takes an Incredible Effort. with help, with breaks.
shedding fluid: another 2 inches have gone at last measure. it may fluctuate.. dont know yet. can see a crease where my R foot joins leg where swelling has gone down some.
I have also noted a change in my thinking..
Up till now I have not had the ability to enjoy Life outside of obligations etc.. As hard as I would try, I have had no comprehension of what healing might mean to me. Recently, when seeing something on television, I have noticed myself thinking, "I would like to go there".. that is completely new for me.
one moment at a time
Tuesday Day 2
up thru the night, then settled. slept almost 4H
12MD: for gut, esophageal burning level .25
Benicar 40mg Q4H..
9pm esophageal burning.
Wednesday Day 3
slept dreaming till 2am - got up and stayed up.
esophageal burning
mino 50mg + 1/2 3rd abx 8am
level .25 daily
stomach is 'delicate' last few days
a 1cm spot R forearm, usually brown has been changing colors thru MP to whitish flaky and now is red, dry. not sore.
Thursday Day 4
slept well when asleep. sat up once thru night 2am. took meds to settle. up 4am.
esophageal burning and gut stasis tell me when meds are due.
R 2nd toe is badly inflamed.. the podiatrist tells me I have 'sharp mischievous toenails' and the puffy feet means feet traumatise easily.
feet sore to walk on.. bones hurt.
mino 50mg + 3/4 3rd abx 9pm
Friday Day 5
slept better with increased abx
inflamed toe is improved
woke with broken back feel
feet sore.
esophageal burning and gut stasis tell me when meds are due.
level .25 this am
backache
tired
Saturday Day 6
awake thru the night needing abx. changed 3rd abx. level 1/4.
brain and toes neuro
eyes
L ear block
gut stasis / pressure
delicate stomach - difficult to know what to eat.
esophageal burning
gut response
feet, under arches sore
high level immune response - gut.
bleh
Sunday Day 7
slept well between wakes.
mino 50mg + 1/8+ 3rd abx
soles of feet - neuro buzz
gut
esophageal burning
L ear
eyes
tired
Last edited on Sat Feb 24th, 2007 23:55 by Aussie Barb
____________________
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: Sun Feb 25th, 2007 22:42 |
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Monday February 26th 8.30am
Benicar 40mg Q5-6H -half tablets prn inbetween. swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 2 per day as required.
3 abx combination as needed: new combination started Sat 24th Feb on day 6:
level 3, cycle 1, day 8:
mino 50mg + 1/10 3rd abx: 10am Sunday
using meds as above to manage symptoms.
symptoms have been difficult - constant meds management was required.
unrelenting gut stasis and esophageal burning were the main factors.. neuro had stepped up. felt out of it.
sleep between wakes for Benicar. 5H.
feet and lower legs ache
L under arch sore (had this as a child)
eyes sticky, blurry, red with black rings.
ears, face and scalp itch
esophageal burn when meds are due
gut thru diaphragm
back, head, neck - ache. panadol.
feet neuro buzz
subcutaneous ouch
new combination:
cycle has lasted to day 8 - without being intolerable.
hoping to be able to do abx QOD now.
meds are lasting longer - less intolerable symptoms. this is a settling in period to new abx.
gut has usual immune response without the frequent intolerable stasis.
L ear may have improved
pufft feet slight decrease
toes are fine
one moment at a time
made it to 11.30pm 37H
woken with acid esophageal gush+
started new cycle:
level 2, cycle 1, day 1: mino 50mg + 1/8 3rd abx: 11.30pm Monday
Tuesday Day 1
very tired. high level immune response.. same symptoms.
gut stasis mild. took bit more 3rd abx.. subsided.
Wednesday Day 2
esophageal stomach symptoms:
took mino 50mg 6am to see if it is enough to carry me thru by itself without taking 3rd abx.
6.40am: took 1/8 3rd abx..
still settling in, assessing 'enough' abx to hold symptoms tolerable .
8.30pm mino 50mg + 1/8 3rd abx required for stomach and esophagus.
level .25
Thursday Day 3
Looks like the meds are going to be similar schedule to previous combination.. changing the combination hasnt changed that.
neuro in feet is interesting
also achey in feet and ankle joints.
lower legs ache
esophageal burning and stomach..
gut and diaphragm
eyes
L ear
puff seems to be decreasing some.. a couple of small wrinkles may be indicative.
8.30pm level .25 mino 50mg + 1/10 3rd abx required for stomach and esophagus. the reduced dose was to assess if level of immune response could be lowered, and then the dose took a long time to be effective.
Friday Day 4
slept well between wake for Benicar.
experiment: substituted an extra Benicar dose instead of the Q this morning and it didnt help. had to take Q as well.
I have so much puff all over me. this is a big job - remodelling, renovating the whole body. ahh well.. one moment at a time.
achy all over. using more panadol again.
all symptoms as usual.
3pm level .25 mino 50mg + 1/8 3rd abx Last edited on Fri Mar 2nd, 2007 08:05 by Aussie Barb
____________________
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 Mar 3rd, 2007 13:15 |
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Saturday March 3rd 11pm
Benicar 40mg Q4-6H -half tablets prn inbetween. swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 3 per day as required.
3 abx combination as needed:
level 2, cycle 2, day 1:
level 1 mino 50mg + 1/8 3rd abx: today for needing extra abx
using meds as above to manage symptoms.
gut pressure and esophageal burning persistent. better at time of report.
feet and lower legs ache
L under arch
feet neuro buzz
eyes puffy, sticky, blurry, red with black rings.
gut thru diaphragm has usual immune response with the frequent intolerable stasis. have to keep the abx up to hold tolerable.
back, collarbones pull, head, neck - ache. panadol.
subcutaneous ouch
inflamed toes: R a little sore
Tongue sore when waking: seems to be from teeth, so tongue must be more swollen.. that would fit with the rest of the GI tract inflammation.
immune response remains high level. Noting: physical condition continues same: showering is exhausting. washing hair cannot be done at same time. getting dressed properly (ie 2 items of underwear and a summer dress) has to be with help - is exhausting, and to walk any further than chair to chair is when I find out the reality and I get a shock. To get into or out of the car, my feet and legs have to be lifted in and out.
L ear mostly improved
pufft feet slight decrease, there is a wrinkle and decrease in puff where foot joins leg. ankles still pufft out.
There are some small wrinkles and dents in my legs, and upper arms showing some deflation.
I plan to get a digital camera to record the puff and the shedding of it.
I have decided that all the 'after' skin issues will just have to be my badge of honor for having survived at all..
one moment at a time
Sunday Day 2
slept 4H
10am: level 1 mino 50mg + 1/8 3rd abx
for esophageal burn, nausea, weakness.
10pm: esophageal burn, nausea and chest pressure continue: mino 50mg + 1/4 3rd abx (increase) settled and slept.
Monday Day 3
slept 4H
woke with symptoms better than yesterday, so the increase has helped.
neuro today
12MD: level 1
esophageal burning and gut response
mino 50mg + 2/8 3rd abx
Tuesday Day 4
slept 3+H woke for Benicar. slept 2H
esophageal burning and gut response
esophageal spasms when swallowing at times.
esophageal burn with cuppa again.
nausea
fragile stomach
neuro soles of feet
pain in L big toe transient
feels like a "cap of numbness" around skull
much like > numb hands on waking.
wheezy chokey cough
eyes
ears
dents and deflation signs on skin. ankles down a little.
7am: level 1. mino 50mg + 3/8 3rd abx
Wednesday Day 5
awake 12.30am - out of bed.
esophageal burning.
3am: level 1. mino 50mg + 3/8 3rd abx
Last edited on Tue Mar 6th, 2007 17:17 by Aussie Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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IngeD
Moderator
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Posted: Sat Mar 3rd, 2007 15:37 |
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Hang in there Barb! Whenever I get a bit down I think of you and realise how lucky I am! You have amazing stamina! And just think of all the bugs that are being killed every day! You will get there!
We will ALL make it we WON'T let them get the better of us!!! I am still so thankful to finally know ( at least the bits that I understand ) what is going on in my body! And especially understanding that there is a reason for feeling ill! And of course knowing that it is possible to beat this!
Love, Inge xxxxxooooxxx
____________________
Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08)25D6.4 (June09) NoIRs limited outings covered lo lux home Ph3
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Aussie Barb
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Posted: Tue Mar 6th, 2007 04:33 |
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My aching feet and sore L arch are remodelling my feet.
My feet are starting to take shape today. from under the arch.
L upper arm is starting to shape. first dent on the upper outer.
still lots of puff all over me yet.
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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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Sydney Chris
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Posted: Tue Mar 6th, 2007 09:48 |
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Good to see the trend of reduced swelling continues Barb..
Best
Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Aussie Barb
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Posted: Wed Mar 7th, 2007 07:59 |
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Wednesday March 7th 6pm
Benicar 40mg Q4-6H -half tablets prn inbetween. swishing every time now.
Quercetin TID is required so far
tylenol (panadol) x approx 3 per day as required.
3 abx combination as needed:
level 3, cycle 1, day 1: mino 50mg + 1/4 3rd abx:
6pm today for needing extra abx
using meds as above to manage symptoms.
gut stasis and esophageal burning persistent.
feet and lower legs ache
L foot under arch
feet neuro buzz
toes transient pain
eyes puffy, sticky, blurry, red with black rings.
gut thru diaphragm has usual immune response plus the frequent intolerable stasis. have to keep the abx up to hold tolerable.
esophageal spasms when swallowing at times.
esophageal burn with cuppa.
nausea
fragile stomach
back, collarbones pull, head, neck - ache. panadol.
R side pains transient - under ribs etc
subcutaneous ouch
inflamed toes: R a little sore
wheezy chokey cough
dents and deflation signs on skin. ankles down a little more.
L ear mostly improved
We now have a digital camera to record the puff and the shedding of it. - decreasing ever so slightly, daily.
I have decided that all the 'after' skin issues will just have to be my badge of honor for having survived at all..
one moment at a time
Thursday day 1:
up thru the night. didnt sleep much. I dont worry about it.
esophageal burning.
esophageal spasm
R side back and upper quadrant
gut response and other symptoms same.
burning.
neuro feet
more skin deflation signs but still highly pufft.
8pm: level .5 : mino 50mg + 1/4 3rd abx
Friday day 2
slept till 2am. got up
esophageal burning
nausea
gut diaphragm
neuro soles of feet + they feel numbish.
burning
R side
neuro
L toe really inflamed
chokey cough on on till sick. cough drop and Benicar eventually helped.
more deflation, dents and wrinkles every day from fluid shed.
2pm mino 50mg + 3/8 3rd abx - not enough
5pm: level .5 - relief
Saturday Day 3
slept 5H ahh
body aching - panadol
esophageal burning
burning
nausea
6am: level .5 - relief
gut diaphragm.
R shoulder, neck pain continues
when I am reaching for anything> muscle spasms - continues
barely walking from one chair to another continues.
neuro soles of feet + they feel numbish.
eyes
still very pufft
burning
more deflation, dents and wrinkles every day from fluid shed.
feet decreasing - wrinkles
ankles decreasing
esophageal burn. 11am mino 50mg + 3/8 3rd abx
burning continues
level 1 5pm
the 'red spot' on my R forearm continues. is like a burn to look at and feel. not sore. it was previously a light brown pigmented spot expanding slowly for the last many years.
Sunday day 4
slept again. 5+H
sore L knee to start but then ok
began nausea /stomach/esophageal 6am all meds up to date. level 1.
relief started coming by the afternoon.
wheezy cough - sensitive throat, easily set off coughing.
neuro feet: felt icy cold and then hot.
I sometimes have bouts of IBS / painful!! To stop it, I need to quickly chew a whole Benicar regardless of when I took it last.
teeth feel achey - transient.
I was very hot going to bed.
Monday Day 5
not sleeping. up at MN.
esophageal burn 2am level 1. 20H
no mino + 3rd abx for 40H
Generally - the immune response does seem to be settling with this meds.
Benicar Q4H still for esophageal burning and burning.
cough same
am still shrinking - dents and wrinkles.
Thirst: new for me.
12MD: level 1 for stomach and burning.
9pm
Tuesday Day 6
slept till 2am. got up.
stomach and esophageal continue
continuing level 1 only as required 5am
level 3
mino 50mg + 1/4 3rd abx 6.30pm
Wednesday Day 1
slept till 2am. got up.
level 1 burning esophageal. burning.
R shoulder
neuro feet
body aching all over - panadol
esophageal burning - Benicar Q4H
gut/ body
level 2 for the burning
Thursday Day 2
slept till 2.30am
burning mino 50mg + 1/4 3rd abx 32H
level 2.
I can see that my toes are starting to come down, moving closer together from the "sticking out" - from puff.
neuro feet notes: interesting - half numbness/ half feel. I wasnt aware of the numb until the healing of it started. is probably why I could walk on gravel when others couldnt. (and then later became hypersensitive). could stand really hot water.
where previously sun spots on arms appeared to be healing ie flakey, - now noting small white dots. Still have raised small crusty dots of more - presumably healing on both hands.
red "burn" spot on R arm is changing color, lightening off.
Thank you to All who rejoice for my small steps of progress..
My brain hasnt reached comprehension yet.. I am only up to observing so far.. I think that when I FEEL better, will make a difference.
Last edited on Thu Mar 15th, 2007 11:39 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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melinda
Member in Phase 3
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Posted: Fri Mar 9th, 2007 16:38 |
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Hi Barb
My computer died and I just got a new one so am back on line reading up on how everyone's doing. Glad to see you have some signs of progress, a dent or curve is a good beginning. Hope more take shape soon.
Best, Melinda
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Lyme, parathyph86, hepB73, MP 9/04, 125D58, 6/07 D2514, Ph2 02/04, Ph3 3/06, ambien, zanax, NoIRs
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Aussie Barb
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Posted: Thu Mar 15th, 2007 23:33 |
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Thank you to All who rejoice for my small steps of progress..
My brain hasnt reached comprehension yet.. I am only up to observing so far.. I think that when I FEEL better, will make a difference.
Friday March 16th 8am
Benicar 40mg Q4-6H.
Quercetin TID
tylenol (panadol) x approx 3 per day as required.
abx as needed:
level 3, cycle 3 day 3:
mino 50mg + 1/4 3rd abx: 2.30am Thursday
6.30pm today = 40H: mino 50mg + 3/8 3rd abx
level 2 Q12H
using meds as above to manage symptoms.
esophageal burning persistent -has to be managed constantly w meds.
esophageal spasms when swallowing at times.
esophageal burn with cuppa.
sudden esophageal gush
fragile stomach
feet and lower legs ache
feet neuro buzz
toes transient pain
eyes puffy, sticky, blurry, red with black rings.
gut thru diaphragm has usual immune response.
back, shoulders, collarbones pull, head, neck - ache. panadol.
subcutaneous ouch
burning has lifted from meds adjust.
toes: R a little sore
wheezy chokey cough - sensitive throat. easily set off.
occasional flank pain.
body ache and stiffness
teeth feel achey - transient.
sinuses are always stuffy.
L ear mostly improved
when I am reaching for anything> muscle spasms - continues
general physical debility continues.
I sometimes have bouts of IBS / painful!! To stop it, I need to quickly chew a whole Benicar regardless of when I took it last.
abdo had softened some (not in the middle) but is hard again now.
dents and deflation signs on skin. ankles down a little more.
I can see that my toes are starting to come down, moving closer together from the "sticking out" - from puff.
neuro feet notes: interesting - half numbness/ half feel.
where previously sun spots on arms appeared to be healing ie flakey, - now noting small white dots. Still have raised small crusty dots of more - presumably healing on both hands.
red "burn" spot on R arm is changing color, lightening off, thinning down.
one moment at a time
Saturday Day 4
another bout of IBS / painful!! To stop it, quickly chewed a whole Benicar regardless of when I took it last.
Sunday Day 5
5am today: mino 50mg + 3/8 3rd abx Q36H
level 2 Q12H
using meds as above to manage symptoms.
Although still pufft yet, I am starting to be able to recognise my feet moving towards a more normal shape.
body stiffness and ache. - panadol keeps it tolerable
whole of body
other symptoms same.
Monday Day 6
can see my knees appearing.
feet pufft esp R.
aching feet, joints.
skin signs of deflation continue slowly.
ears
immune response continues
meds as above to manage symptoms.
level 2 7pm
Tuesday Day 1
slept 5+H with wakes
esophageal burning (need to take abx)
red "burn" spot on R arm is changing color, lightening off.
neuro feet
eyes..
muscles spasm when changing position.
R side pain tolerable
other symptoms same
skin signs of puff decrease. dents, wrinkles, deflation marks, have a gully at wrist, and crook of elbow.
under the light, the stretched marks can be seen how the skin has been pulled from both ways.. I was struck by grief at the sight of it.. a grief for what has happened. prob due to take my meds.. and to eat..
7am today: mino 50mg + 1/2 3rd abx at 48H
Wednesday Day 2
Have been using Benicar 60mg at night to go to bed to settle gut bloat and it helps me to sleep better.
I am managing with less abx this last couple of days..
abdomen is hard.
ears
eyes
Last edited on Tue Mar 20th, 2007 20:14 by Aussie Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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hrts4me
Member in Phase 2/3
| Joined: | Sun Oct 17th, 2004 |
| Location: | Texas USA |
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Posted: Wed Mar 21st, 2007 07:17 |
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Aussie Barb wrote: Wednesday Day 2
Have been using Benicar 60mg at night to go to bed to settle gut bloat and it helps me to sleep better.
Barb is this allowable for others? I have not been able to find one sleep aid that helps my insomnia, whatsoever. Maybe an increase in B 40mgs to 60 mgs. would help. Is this just an occassional or may it be used regularly?
Thanks
Hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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Aussie Barb
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Posted: Wed Mar 21st, 2007 07:29 |
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Hrts
If your Dr agrees, to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during the cycle.. personally, I always have my alarm set for Q6H but if required for relief, I use my Benicar, no matter how long since the last dose..
all best, 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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