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Barney in phase 3

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Aussie Barb
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Posted: Sat Apr 2nd, 2005 02:24

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Dear Barney

Have you tried increasing the Benicar frequency to see if that helps the pain?

... Barb ...

____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP

BARNEY
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Posted: Sat Apr 2nd, 2005 02:33

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Barb,

I already do 20mg Benicar Q3hrs. I am having a hard time getting anymore free Benicar and I really cannot afford $133.00 for 90 tabs. It takes 120 tabs just for 1 month on the Q3hrs. I don't know what else to do.

Would I increase to 20mg Benicar Q2hrs?

Love you girl. xooxoxoxox Barney

____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day

Aussie Barb
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Posted: Sat Apr 2nd, 2005 02:59

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Barney

hmmm... I understand about cost.. I take my Benicar Q2H most of the time to keep symptoms managable..

not sure how long it is since you took mino dose> so ... more info: skipping your mino dose may give you more herx than changing to 50mg daily while you have company etcc..

another way of relieving symptoms if they get *too hot* is to drop back the mino from the 100mg dose QOD to 75 mg QOD.. and see if you still herx but with less pain... whilever you are herxing you are not stalling..

all best, Barb ...

____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP

BARNEY
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Posted: Sat Apr 2nd, 2005 03:14

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Barb,

I have been on 100mg Q48hrs for a week or so now. I think I will do as you mentioned and take 50mg every day until my company leaves (only 2 days).

Thanks Barb for the reminder. Love to you xoxoxoxox Barney

BARNEY
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Posted: Sat Apr 2nd, 2005 10:07

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ADDITIONAL DAY 91 POST:

Took 50 mg mino as maintenance while I have company. Barney

BARNEY
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Posted: Sun Apr 3rd, 2005 04:15

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DAY 92, APRIL 2, 2005, PHASE 1, BP 112/73 P 93, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, 50MG MINO, NO PAIN PILLS

A LITTLE TOOTH ACHE IN ONE TOOTH ON LEFT SIDE. SHOULDERS HURT A LITTLE AND THAT'S ABOUT IT OTHER THAN BEING TIRED.

STILL HAVE COMPANY.

HANG IN THERE, WE WILL MAKE IT!!! BARNEY

BARNEY
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Posted: Mon Apr 4th, 2005 03:32

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DAY 93, APR 3, 05, PHASE 1, BP 110/66 P82, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, 1 ACIDOP, NO MINO

COMPANY HAS GONE HOME!! HAD REALLY MIXED EMOTIONS ABOUT THAT. WAS GLAD THEY WENT HOME CAUSE THE HOUSE WAS QUIET AGAIN, BUT CRIED CAUSE THE HOUSE WAS LONELY. FELT LIKE THE RAGING HORMONES OF PREGNACY (HAHA).

LEFT EYE AND LEFT SIDE OF NOSTRIL BURNING (OR DRY), NOT SURE WHICH. VERY TIRED AS I DID NOT SLEEP MUCH LAST NIGHT. TOOK 2 NAPS AFTER THE GRANDBABIES LEFT.

WENT TO STORE TO PICK UP COOLER PARTS (AFTER DARK). ALSO, FOUND A PAIR OF CLIPON SUNGLASSES (AMBER) THAT IN COMBINATION WITH THE TENT OF MY PERSCRIPTION GLASSES, THE HEADLIGHTS LOOK AMBER AND DO NOT GLARE, BUT YET I CAN SEE PEOPLE WALKING ON THE SIDE OF THE ROADWAY. BEST $10.99 I'VE SPENT IN A WHILE. ALSO PICKED UP A VERY BROADBRIM HAT FOR SUMMER.

VERY TIRED, GOING TO BED SO I CAN GET UP BEFORE SUN TO FINISH PUTTING THE COOLER TOGETHER. GOT PRETTY HOT INSIDE WITHOUT BEING ABLE TO OPEN WINDOWS OR DOORS.

GOOD NIGHT!! HANG IN THERE, WE WILL MAKE IT!! BARNEY

BARNEY
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Posted: Tue Apr 5th, 2005 02:53

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DAY 94, 4/4/05, PHASE 1, BP 132/56, P 80, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, 1 ACIDOP, 100MG MINO, 1 PAIN PILL

GOT UP AT 425AM, HAD INTENDED TO GET UP AT 5AM TO PUT THE PADS IN MY 'SWAMP COOLER'. IT IS GETTING PRETTY WARM IN HERE JUST ABOUT 4PM AND SINCE I CAN'T OPEN DOORS OR WINDOWS, I FELT IT WAS TIME.

COULD NOT SLEEP DUE TO WORRYING ABOUT GETTING THIS DONE BEFORE THE SUN CAME UP SO I JUST WENT AHEAD AND GOT UP EARLY. HAD TO CLEAN THE WINTER DIRT OUT OF IT, REPLACE THE PUMP AND CONNECT AND INSTALL THE PADS, REPLACE THE WATER LINE, TURN THE WATER VALVE ON, WAIT FOR IT TO FILL AND THEN ....WOULDN'T YOU KNOW IT, THE WATER WOULD NOT FLOW THRU AND I COULD NOT FIND MY REAMER. TURNED IT OFF AND ON SEVERAL TIMES TRYING TO GET THE WATER TO FLOW BEFORE THAT 'BLASTED SUN' CAME UP.

SUCCESS AT LAST.

THE NEXT THING WAS NOT PLEASANT. I HAD BENT OVER SO LONG PUTTING THE PADS IN, THAT I COULD BARELY WALK. AT ONE TIME, I THOUGHT I NEEDED A CANE OR I WAS GOING TO HAVE TO CRAWL FROM ROOM TO ROOM. I DON'T EVER REMEMBER HURTING SO BAD AND FEELING 100 YEARS OLD. I HURT REALLY BAD FROM MY WAIST DOWN. THERE WAS NOT A MUSCLE THAT WAS NOT COMPLAINING.

TOOK A PAIN PILL AND RESTED FOR HOURS. FINALLY, RELIEF. REST OF DAY WAS GOOD EXCEPT FOR BEING TIRED FROM GETTING UP SO EARLY. TOOK A SHORT NAP IN THE RECLINER.

WILL PICK UP MY SECOND ANTIBIOTIC TOMORROW AND GO TO PHASE 2.

HANG IN THERE, WE WILL MAKE IT!!!! BARNEY

BARNEY
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Posted: Wed Apr 6th, 2005 01:14

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DAY 95, 4/5/05, PHASE 1, BP 104/72, BENICAR 20MG Q3HRS, BENICAR 40MG BEDTIME, 1 ACIDOP, NO MINO, 1 PAIN PILL

LEFT SIDE OF FACE INCLUDING EYE AND NOSE WERE HURTING/BURNING MOST OF MORNING. USED MOSTLY MASSAGE TO HELP ELEVEATE. SUBSIDED BY NOON.

TOOK A NAP IN THE RECLINER, THEN WENT TO TOWN (IN THE SUN, COVERED COMPLETELY PLUS NOIRs). HAD TO PICK UP MY Z. IF LIGHT EXPOSURE CALMS DOWN I WILL TAKE Z IN MORNING. AM EXTREMELY TIRED FROM TRIP TO TOWN.

HAVE DECIDED TO ALLOW MY FRIEND TO DO ALMOST EVERYTHING FOR ME IN TOWN DURING DAYLIGHT HOURS THAT DOES NOT REQUIRE MY PRESENCE. I DO NOT LIKE THE FEELING OF FATIGUE THE SUN GIVES ME. I GET SO TIRED, I DO NOT ACCOMPLISH EVERYTHING I SET OUT TO DO IN TOWN.

AM GOING TO BED!!!!!!!!! HANG IN THERE, WE WILL MAKE IT!!!! BARNEY

BARNEY
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Posted: Thu Apr 7th, 2005 01:11

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DAY 96, 4/6/05, PHASE 2, DAY 1, CYCLE 1, BP 108/65 P73, BENICAR 20MG Q3HRS, BENICAR 40MG BEDTIME, 1 ACIDOP, NO MINO, 2ND ANTIBIOTIC, NO PAIN PILLS

NOTHING EVENTFUL TODAY. WAS REALLY SURPRISED THAT THE LIGHT EXPOSURE WAS A LOT MILDER THAN IN PREVIOUS TIMES. VERY TIRED AT THE TIME BUT A LOT BETTER NOW.

HAD A SLIGHT HEADACHE FOR ABOUT AN HOUR THIS EVENING, TOOK A NAP AND IT WAS GONE.

HANG IN THERE, WE WILL MAKE IT!!! BARNEY

TONIGHT IS THE FIRST DAY OF CYCLE 1. SO PROUD TO HAVE GOTTEN HERE.

Aussie Barb
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Posted: Thu Apr 7th, 2005 01:20

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Thank You Barney for posting

and Congratulations on getting to phase 2.

all the best, Barb ...

____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP

BARNEY
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Posted: Fri Apr 8th, 2005 03:27

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DAY 97, 4/7/05, PHASE 2, DAY 2, CYCLE 1, BP 98/59 P 92, BENICAR 40MG MIDNIGHT, BENICAR 20MG Q3HRS, NO MINO, NO 2ND ANTIB, 1 ACIDOP, 1 PAIN PILL

Just a little achy this morning, took pain pill to knock off the edge, extremely tired. Rested all day and slept a little in the recliner. Had a hard time going to sleep and staying asleep.

I actually took a shower and got dressed, all in one day.

Went out after dark to get some groceries and just walk around in the store. Visited my friend for about 15 minutes.

Talked with my dad, he is doing better and that made me feel better.

My grandkids asked me to come up to Albq and stay for a week but I did not feel capable of driving that far (250miles) even tho I would go at night. Just to tired right now.

Going to try to get up off my duff and at least get the dishes in the dishwasher. I need to get a lot more done, but all I get done is thinking about it. Just too tired to move that much.

Otherwise, I am fine.

HANG IN THERE, WE WILL MAKE IT!!!! Barney

DNStog
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Posted: Fri Apr 8th, 2005 04:19

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Hi Barney,

Happy to see so many of your symptoms are easing up or hopefully going away forever.

Know it's hard to predict as we go through the MP phases which ones want to revisit us. I'm at day 100 on MP, 2nd go round of Mino. 75mg after taking a vacation break. Like you, most of my symptoms have packed up and left, except the loss of energy and strength.

I have days when I think I must have a bad case of the lazies since I can't seem to get anything done; and let's face it, the thought of any kind of housework does not bring joy to my heart. :shock:

Anyway, it helps me to realize I'm not going through the MP phases without the validity of others with similar symptoms.

Hang in there and, yes, we will make it, Barney!!!! Now I need to go lay down, again.

Donna

____________________
Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h

spacee
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Posted: Fri Apr 8th, 2005 23:06

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Hey Barney...I'm in the "take a bath and get dressed all in one day group too".

Just checking on you.... :dude:

Spacee

____________________
CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10

BARNEY
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Posted: Sat Apr 9th, 2005 02:28

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DAY 98, 4/8/05, PHASE 2, DAY 3, CYCLE 1, BP 108/74, P90, 1 ACIDOP, BENICAR 40MG MIDNIGHT, BENICAR 20MG Q3HRS, 100MG MINO

DONNA, YOU HAVE IT RIGHT, I AM GOING TO GO LAY DOWN HERE IN A FEW MINUTES.

SEEMS LIKE I AM JUST SO FATIGUED I CAN HARDLY PUT ONE FOOT IN FRONT OF THE OTHER BUT ON THE OTHER HAND I FEEL LIKE I AM JUST BEING LAZY.

I HAVE HAD ONE OTHER THING THAT I KEEP FORGETTING TO MENTION. I AM SURE IT IS A HERX AND I HAVE HAD IT SEVERAL TIMES. IT FEELS LIKE MY WHOLE BODY IS 'QUIVERING' INSIDE. IT IS LIKE WHEN YOU PUT YOUR HAND ON THE REFRIGERATOR AND FEEL THE VIBRATION OF IT RUNNING. WEIRD BUT NOT PAINFUL.

I DID GET MY BEDDING CHANGED, THE DIRTY DISHES ARE SITTING IN THE SINK AND THE CLEAN DISHES ARE STILL IN THE DISHWASHER, BUT MOSTLY I SAT IN THE RECLINER AND DOZED OFF EVERY CHANCE I GOT.

I DID MAKE IT TO WALMART AND AUTOZONE AFTER DARK. MY DOG LOVES TACOS FROM TACO BELL SO WE WENT THERE TOO.

JUST CONSTANTLY SLEEPY BUT SOMEWHAT HAVING DIFFICULTY GOING TO SLEEP AND STAYING THAT WAY A LOT BECAUSE I AM JUST TOO TIRED.

WE WILL SEE IF I HAVE ANY ENERGY IN THE MORNING, MAYBE I CAN PUT THE DISHES UP OR SOMETHING. :cool:

HANG IN THERE, WE WILL MAKE IT!!!! BARNEY

Aussie Barb
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Posted: Sat Apr 9th, 2005 02:53

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Barney

re the quivering and fatigue etc... if the herx is too much you can decrease the mino to 50mg to help.. that is ok..

all best, Barb ...

____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP

BARNEY
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Posted: Sat Apr 9th, 2005 10:03

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Barb,

The quivering comes and goes and is not difficult to handle, it is okay, just weird. The fatigue is okay too, I just rest a lot.

I am a hyper-type person and the fatigue keeps me from being hyper. I look around the house and just say "Oh well, I will get it done .... one day soon". Since I am the only one who has to look at it, that's okay with me.

Would have liked to gone to Albq this week(had an invite from the grandkids) but I did not feel up to a 300 mile drive with all those headlights coming at me, despite the new driviing lens clipons I found (they make the headlights look amber and I can still see the edge of the road for someone walking). Then have to cover windows when I got there. I'll just stay in my cave and rest.

As long as the PAIN is not bad, the fatigue and quivering are okay. When I can't make it to the fridge or the bathroom from fatigue, then that will be unbearable.

Thanks for the suggestion, I definitely will keep it in mind.

HANG IN THERE, WE WILL MAKE IT!!! Love, Barney xoxox

BARNEY
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Posted: Sun Apr 10th, 2005 02:37

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DAY 99, 4/9/05, PHASE 2, DAY 4, CYCLE 1, BP 117/78 P 78, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, NO MINO, 1 ACIDOP, TOOK 2ND ANTIB ON 4/6/05, 1 PAIN PILL, 2 TYLENOL 650MG

STARTED THE DAY WITH LOWER BACK PAIN AND SORE (R) HIP, HEAD/NECK ACHE, AND NAUSEA MOST OF DAY (NOT TOO BAD). TOOK PAIN PILL, PAIN SUBSIDED BUT RETURNED LATER. DECIDED TO TRY 2 TYLENOL 650MG. THEY WORKED GOOD.

LAID DOWN FOR A NAP ABOUT 430PM AND JUST WOKE A FEW MINUTES AGO AND REMEMBERED I NEEDED TO POST. THRU ALL THE SLEEPING (WHICH WAS GOOD), I RAISED UP LONG ENOUGH TO SWALLOW MY MEDS. I LAY MY NEXT PILL OUT AND SIT IT BESIDE OF A GLASS OF WATER, THAT MAKES IT REAL EASY TO TAKE IT AND GO RIGHT BACK TO SLEEP.

I AM AMAZED AT FEELING SO WELL TODAY. HAD LOTS OF GOOD PHONE CALLS, BUT MISSED ONE I HAD REALLY ANTICIPATED WHILE SLEEPING.

HANG IN THERE, WE WILL MAKE IT!!!!! BARNEY

THAT IS THE EVENTS OF MY DAY, WE WILL SEE WHAT TOMORROW BRINGS.

BARNEY
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Posted: Mon Apr 11th, 2005 01:34

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DAY 100, 4/10/05, PHASE 2, DAY 5, CYCLE 1, BP 115/80 P 89, BENICAR 20MG Q3HRS, BENICAR 40MG MIDNIGHT, 1 ACIDOP, 100MG MINO

HAD A LITTLE LOWER BACK PAIN NOT ENOUGH FOR PAIN PILL.

TIRED-NOT BAD. HAD SOME REALLY THICK PHYLEM. WIND IS HOWLING AT ABOUT 50 MILES PER HOUR.

ABOUT 430PM, STARTED FEELING REALLY FATIGUED AND COULD NOT KEEP FROM CATNAPPING THRU ALL THE TV PROGRAMS I HAD PLANNED TO WATCH.

FEELING SAD. GOING TO BED AT 10PM.

OVERALL NOT A BAD DAY. REALLY EXPECTED PHASE 2 TO BE A WHOLE LOT ROUGHER THAN PHASE 1, NOT BAD SO FAR.

HANG IN THERE, WE WILL MAKE IT!!! BARNEY

BARNEY
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Posted: Tue Apr 12th, 2005 05:08

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DAY 101, 4/11/05, PHASE 2, DAY 6, CYCLE 1, BP 101/65 P 96, BENICAR 20 MG Q3HRS, BENICAR 40MG MIDNIGHT, 1 ACIDOP, 1 PAIN PILL (LATE PM), NO ABX

LEFT RIB (I CRACKED YRS AGO) TWINGED ALL DAY OFF AND ON.

DID WELL MOST OF DAY OTHER THAN THAT DARN CATNAPPING EVERYTIME I SIT DOWN.

WENT TO TOWN AFTER DARK (FINALLY STAYED AWAKE LONG ENOUGH), WENT TO MY 82YR FRIEND'S HOUSE AND HELPED HER REPROGRAM HER VCR AND RETRIEVE HER EMAILS. ALMOST COULDN'T THINK WELL ENOUGH TO GET THE VCR REPROGRAMMING. STILL SCRATCHING MY HEAD OVER ONE PART OF IT AND CAN'T REMEMBER WHAT I AM DOING WRONG.

WENT TO GET SOMETHING TO EAT AT A RESTAURANT (THIS IS VERY UNUSUAL FOR ME). WENT TO WALMART AND FOUND REDISHADES FOR $3.88. GOT HOME AROUND MIDNIGHT. fILLED THE DOG'S BUCKET OUTSIDE, EMPTIED THE TRASH, YOU KNOW, ALL THOSE THINGS WE CAN NOT DO IN THE DAYLIGHT HOURS.

AM SO TIRED I CAN HARDLY TYPE THIS.

MOST OF THE DAY WAS UNEVENTFUL AND REALLY THOUGHT I HAD GOTTEN AWAY WITH LITTLE PAIN UNTIL THE SHOULDES STARTED AFTER 7PM. STILL TOLLERABLE, BUT HURTS BAD ENOUGH.

THOUGHT I WOULD HERX WORSE TODAY, WAS REALLY EXPECTING IT TO HIT LIKE A TON OF ROCKS.WE'LL SEE WHAT TOMORROW BRINGS.

HERX IS LIKE A BOX OF CHOCOLATES, YOU NEVER KNOW WHAT YOU ARE GOING TO GET. (HAHA)

HANG IN THERE, WE WILL MAKE IT!!!!! BARNEY

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