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Bonnie2
Member in Phase 2
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Posted: Thu Sep 1st, 2005 02:47 |
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| Dr. Marshall it tears at my heart to know that you think I feel anything neg. about the mp..,or YOU,YOU Dr.Marshall are my hope YOU are the prayers of many friends and family answered from ALL of US.I am so sorry you got that from my post.my frustations are from the 5 dr., that told me NO,the mp is unproven,not conventional,I knew as soon as I was told about it that thia was my salvation.Dr.Marshall my Dr. now told me in the begining that he would help because he saw the high rate of success that you've had w/patient recovery,but I can't get him to even call you or get on line to find out the proper way to do this thats why I almost died when he gave me zithromax w/started mp.I didnt have a laptop then to do my own research,IT WAS YOU that asked if someone would volunteer to help me by phone till I could get my laptop,I have nothong but love for you treveor as we all do.You know my dr. still asks me sometimes why I wear my whole body covered.Now thats REALLY frustrating.SO PLEASE accept my apoligy for any disress my post caused you it was totally UNINTENTIONAL.and FOR the Dr.s out there that read this post blessings to you as well...most deeply sincere 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Sep 1st, 2005 06:47 |
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We are all rooting for you Bonnie.
You didn't offend me, I just wanted to make the constraints we are operating under quite clear, so that you understand why we (generally) do not publicly criticize Doctors, or their opinions.
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Bonnie2
Member in Phase 2
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Posted: Sat Sep 3rd, 2005 05:57 |
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| hello all u beautiful people,yep I feel way better,found out the fluid on my lungs are not pnuemonia but more than likely from my water cooler!wierd I know but that has happened to me before,sleeping under it at night all night,thanx to all of u 4 ur concerns.this problem is way easier to get rid of than pnemonia,and I won't have to b off mp for as long yeah:-)had to redue the echo cuz somehow it got misplaced.The story is that I should have had it done on thurs.,but my paperwork clearly stated fri.,so they can't seem to know where it went,Dr. got on them,guess it's happened b-4,so will finally find out results on 6th of sept,tues.I have feeling of a kind of peace now and am not as fearful,so I am ok with whatever it will show.Thanxto p.bear 4 telling me to cry and relieve the srtess,really helps....ALOT,and with all of you rooting 4 me has me on a cloud.just herxing mainly in my jaws,neck sinusesrunningand ankles,but I can totally deal w/that,many blessings to all of you thanx 4 getting me out of the hole I was falling into...luv ya all 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sun Sep 4th, 2005 08:12 |
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| doing better everyday,thanx all 4 ur support pain mostly now,but that aint nothin,I can dealw/that sshhhooootttt,blessings,oh still no cardiac herx,will finally get readings on thi coming tues.am still following aussie barbs advice of mino25/24hrs....beni40/6hrs,will try mino every other day after talk to dr.am on diuretics to help w/water on chest/ankles hands and knees,blessings 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Sep 4th, 2005 08:22 |
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Thank you for posting Bonnie,
Is good that you are doing well.. Have you checked that the diuretic is compatible with the MP.. no thiazide.. as per MEDICATIONS TO AVOID ON THE MARSHALL PROTOCOL
and take all care re light exposure when going out.. a reminder that protecting yourself well from light exposure and taking the Benicar Q4H for up to 12H after should help to keep symptoms minimal.
take care, 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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Bonnie2
Member in Phase 2
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Posted: Mon Sep 5th, 2005 01:14 |
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| thanx 4 the heads up barb...after the zithromax experience I tell my dr.what I can have,I learned a bvaluable lesson and only need to be burned once,,but was so dang tired I missed my 6am beni so am herxing bad ,but I know that will pass again thanx 4 heads up
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Wed Sep 7th, 2005 03:41 |
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| feel bad,didnt want to get out of bed,but if I dont I wont get phlegm up,need to get that up as much as can,barney gave me wonderful breathing exercise to use thru the day to keep lung fluids from settling,really works,I use it in morn now b 4 I get out of bed.sometimes get quite lot,other get just enough to clear lungs to be amulatory enough to walk my hall to living room.so I stress getting as much info about lung exercises from respitory persons as possible.Barney told me simple one,sit up straight,breath in thru nose,as much as can,then breath out thru mouth,thru tightlips like when you do the lung capacity tests and keep blowing till can't no more.She wasn,t clear on how many times,I do 3,and then do 3 times during day,everytime something comes up and I am not using inhailor as much,and am also walking farther in my home which helps lung move also.herxing was bad today,jaw joints,fingers swollen ankles on fire and this unrelenting neck,lower back pain,but have new tool to breath better,strenghten lungs,walking more so my steps backward are less and less,thanx to all of your wonderful support...oh STILL NO CARDIAC HERXING,so the prayers are working blesses to u all luv ya all 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sat Sep 10th, 2005 04:03 |
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| AM STARTING THE MINO 25MG/48HRS,ROUGH BUT i'LL GET USED TO IT,HAVE BEEN CARDIAC HERX FREE NOW CLOSE TO 3WKS,DR.SAYS SHOULD B OK.SO I AM NOW AT BENI 40/6HRS....MINO25/48.THIS IS MY 1ST DAY W/O MINO YEAH ROUGH,FEEL HOT FLASHES STILL JAW,GUM PAIN.JUST WANT TO SLEEP ALL TIME,DONT WANT TO GET UP,BUT AM NOT SLEEPING EITHER,I CANT SLEEP AT NIGHT EVEN W/SLEEP MED/AMBIEN10MG+5MGVALIUM,READING ,NOTHING HELPS,SO I END UP DOSING ABOUT 4:30-5:00 THEN SLEEP TILL 2-4:00PM,BREATHING BACK TO WHERE I WAS WHEN STARTED MP ALMOST THANX TO BARNEYS LUNG EXERCISES,GO BARNEY!,VERY IRRITABLE,STILL LOTS NECK PAIN AND VREY LOWER BACK.FELL ABOUT 2 YRS AGO AND SNAPPED MY TAILBONE BAD,SINCE THEN SITTING HAS BEEN REAL PAIN IN THE A--,HAHA,BUT THE MP IS EXASTERBATING THE NERVE PAIN,WILL ASK DR. TO CHANGE PAIN MEDS.IN CALIF,NEW LAWON PAIN PATIENTS STATES THAT MEDS SHOULD BE CHANGED EVERY 6-8MONTHS,A BILL SENATOR VASCONCELLOS OUT OF S.BAY AREA HELPED PASS.SO IF YOU ARE HAVING PAIN /DR. WONT LISTEN,INSIST HE REFER YOU TO CLOSEST PAIN CLINIC AS THEY ARE MORE AWARE OF NEW LAWS THAN GP'S,OR TELL YOUR GP THAT HE NEEDS TO EDUCATE HIMSELF AS HE CAN BE LIABLE FOR MALPRACTISE/FINES FOR NOT FOLLOWING NEW LAWS,ALSO WAS BIG SUIT AGAINST DR.INCA.WHERE A WOMAN W/CANCER SUFFERED AND HUSBAND GOT $AND DR.PRACTICE CLOSED FOR ABUSE,ANYWAY THATS IT TILL NEXT BAT TIME AND NEXT BAT CHANNEL...2BONNIE
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sun Sep 11th, 2005 03:45 |
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still havin hot flashes,eyes really sensitive today having to use outside glasses inside,bad b.o. againheadaches,feel crappy,hands swollen,neck pain,I am going thru my breakthru pain meds quick.I get 30 percocets 5/325/4aday,and when I first got them I took maybe 1-4 week,now 2/day,water is off my feet,I see my ankles again feel blah,thru up all day,fluids are to keep down too,but I am healing,shall persivier,just the pain,my eyes,I wear my glasses faithfully so dont understand.maybe because am doing mino/48hrs now,think will do beni/4hrs to see if It will helpwould that b ok,very weakness,brain foggy.....she's breakin up captain kirk,what should I do?  I know watch XENA,WARRIOR PRINCESS
2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Sep 11th, 2005 03:56 |
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Bonnie
You may find that taking your mino 25mg Daily gives you more tolerable herxing than the QOD dosing.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
there is no way to hurry the process.. it is best and safest to keep the herx at a tolerable level.. and you may need to do daily mino 25mg for a while yet till the herx settles..
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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Bonnie2
Member in Phase 2
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Posted: Sun Sep 11th, 2005 07:17 |
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Thanx barb,was afraid you would say this,I just thought since I hadn't had any cardiac herxing in at least 2-3 wks and really wasn't feeling herxing like I had been that it would be ok to start the mino/48hrs,but will do as advised,I do realize that when I go to mino/48hrs that I feel worse,It does even out,I just wanted to see if cardiac herxing was safe at that dosage since it had been unapparent.I only post how I feel every day or so because I thought that is how it is done for dr.s to see a clearer pic. of patients day to day struggles/changes of herxing,if I am reporting my symptoms to close together just let me know,I will only post at an interval that you suggestthanx for your work,blessings
2bonnie
p.s. yesterday was 1st day w/o mino in like I said 2-3 wks,so I expected to feel bad,I did take today,but if you think I should stick to mino everyday with minimal herxing,then I will,I just started feeling myself again with no real herxing like before so I thought it was time to move onLast edited on Sun Sep 11th, 2005 07:24 by Bonnie2
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Sep 11th, 2005 07:32 |
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Bonnie
Thank you for posting.. you may post your progress and or questions here anytime you like..
You may take the mino 25mg in whatever schedule gives you tolerable herxing.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. If and when the QOD dosing is tolerable to you, is fine..
thanks Bonnie, 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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Bonnie2
Member in Phase 2
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Posted: Tue Sep 13th, 2005 20:40 |
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I CANNOT GO TO SLEEP HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!tried everything,I feel as tho I am on constant adrenaline,sunday,monday,tues,no sleep,tried taking extra ambien w/dr ok,trieddoing what little exercise I can,had my brother over here last night so I could take long hot bath and my husband would have help w/me in/out of tubtried meditation,tried a help go to sleep tape from friend,tried xtra valium w/dr. ok,tried xtra pain med tried EVERYTHING,has this happened to others? am very frustrated and back is killing me from looking at posts to find out and researching web.med for sleep,insomnia disorders,is this a herx?????????????please if you can help please do as soon as possible,
also got echocardiogram back dr.woulnt tell me anything other than he has referred me to the new cardialogy dept.and I am seeing thehead doc there,my appt is 9:00 on this coming monday,found out today so sleeplessness isnt over that,its so frustrating,because of all the biofeedback techniques I know from my painmanagement clinicI gotta know if this is a herx symptom so I can deal w/it if when it happens again,I am exhausted,but my eyes wont shut
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Tue Sep 13th, 2005 20:57 |
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Dear Bonnie
Do you want to try a change in your mino dosing.. if the herx is quite tolerable now on Daily dosing you could try to extend it out to the 48H schedule... that may be a help..
Quercetin is a possibility to help.. although it is early in the MP for you yet ... and can sometimes make things worse if too early... see the info in this FAQ How often should I take Quercetin?
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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Bonnie2
Member in Phase 2
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Posted: Fri Sep 16th, 2005 05:21 |
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thanx barb will try the mino change 1st,as w/that i get tired/weak,maybe will help me sleep.passed out yesterday finally,watchin the telly,but then phone rang............ect.so was up again.didnt take mino today,sister from out of town here visitng,also had friend here that does hypnosis(20yrsexp.)she brought me some tapes that are just music,so when I got alone I went to bed,tape in and slept from 3pm till 7pm,when hubby woke me up,didnt want to get up but couldnt go back to sleep so,knew house rule no wkin me up he was concerned that i hadn't eaten being diabetic,so that was ok.Knew problem besides the usual,I am sooooooo constipated,been using suppositories as dr.says because of my history of having a colostomy,it is best to try to get things movin from the bottom,but 2 days not worked yet I see himDR,tommorrow,fri.,then cardialogist on mon.will b gettin new blood work on renal function/hormones/calcium ect.thanx for your work luv ya for it,many blessings to you hon,talk at ya later
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Fri Sep 16th, 2005 05:26 |
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Bonnie
Thank you for posting.. re constipation: Dr Marshall also recommends Milk of Magnesia.. and it may also be helped by keeping the herx tolerable.. and as a diabetic you would be aware of your diet, and drinking enough water.. and adequate rest..
and this may help What kind of probiotics should I use?
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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Bonnie2
Member in Phase 2
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Posted: Sat Sep 17th, 2005 06:52 |
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| thanx again the suppositories finallt helped,because I had a colostomy before my dr.wanted to try to get the feces moving from bottom w/o to much bearing down from the top of the colon,where the problem was.I use milk of mag.,whenever I feel the feces backup more around the belly buttun,I dont have a belly button,but around there.I have also used the clear drink that comes in the 12oz green bottles,likeunto,7up,cant remember what is called,but I have problems time to time because of major scar tissue from colostomy,anyway,have slept about 6hrssince posted yesterday,tell trevor thanx 4 advice,blessings to you for your work 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
| Posts: | 2125 |
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Posted: Sat Sep 17th, 2005 20:26 |
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| BonBon, I think the green bottle med is most likely Mag Citrate. glad to see you progress. P.B.
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Bonnie2
Member in Phase 2
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Posted: Sun Sep 18th, 2005 07:12 |
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| slept again 6/hrs yeah! still groggy,but can sleep little,used chait today as my ankles didnt want to stop burning,cramping(*chair)have been reading a book I got yrs ago,The power of Now,by ekardt Tolle,It teaches you to understand what the "pain body" is and to realize that our selves only live in The Now,interesting concept when pain is bad and makes you think of past bad experiences,or worry about future which hasn't happened yet,pain clinic gave it to me and it helps get rid of pain thru thinking.I f you keep your thoughts in NOW,you learn to have quite in the mind thus allowing you to not think of anything,including pain,just thought I'd pass that on NOW,haha,weird I feel crappy but have a peace over me thats keepin me from.....I don't know,go see the bigwig cardialogist on monday,real nice,explained that I am on mp,that ant sit in office all day so I am the 1st patient in the morning,totally understandable,think I like this Dr.already,many blessings all will report on monday let ya know how the cardialogist went.bye 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Tue Sep 20th, 2005 06:11 |
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| so I went to the cardialogist today to find out about the echogram,told him that I had sarc,the p-e-r-s-o-n-laughed me out of his office after humiliating me,so nevertheless will talkabout it in a day or ten,cant stop crying,he sent me back to my dr.because my pulse ox was 84,asked if he would set up a mri for me as the echo showed enlargement,again he laughed and in his very irritating,almost unrecognizable accent he laughed again,told me you must be kiddin why would med i cal pay 3000$ for you mri,hahahahaha,laughed at me being covered from head to toe,cant have vitamin d,hahahahahahah me no see that since me in school,hahahahaha,I gotta goany way my blood gases that MY DR. had done arent good................like I saidmy .....o2 saturation/84.1.........po2/50............pco2/51.3 anyway now they want to screw w/me and give me one of those big ass tanks to manage w/my wheelchairand telling me that the little ones arent covered by med i cal so I still am homebound,I cant handle chair/tank same time,thanx reagon,bushes,lots,really appreciate the hand tieing of my Dr. and all those who are trying to help me have some type of life,but I also wanna say no thanx to the Dr.s out there that think they have crowns on their heads,sorry for rambling,I'm gonna go have a stroke,heart attack or maybe a nice blood clot,have a good one all 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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