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sue from Indy
Member in Phase 3
| Joined: | Tue Jun 21st, 2005 |
| Location: | Indiana USA |
| Posts: | 536 |
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Posted: Tue Feb 20th, 2007 07:56 |
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Barney,
How wonderful for you. This couldn't have happened to a nicer person. I'm so happy that you are doing so great. I look forward to those times. I'm a year and 1/2 into this and knowing where you are helps so much. I know each of us may take longer or shorter, but this works. And I feel like you, I don't care how long it takes
Even if I had to do MP the rest of my life...I WOULD, it means that much to me to feel this good.
Best to you Barney -
Your friend, Sue
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Sarcoidosis/skin, lungs, joints, MPh1 7/05, Ph2 11/05, Mod Ph2 8/06, Ph312/06, NoIRs, 1.25D =8 Oct08
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BARNEY
Member in Phase 3
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Posted: Mon Feb 26th, 2007 21:30 |
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DAY 785, 2/26/07, PHASE 3, DAY 2, CYCLE 16/C/D/Z, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, NO ABX COMBO, 1 ACIDOP, NO PAIN PILLS, ALL TOLERABLE
Hoooray....a day with absolutely no pain in my hips or legs.
This is the first time in quite some time that this has happened. I am so thrilled....I was about to lose my mind..if I have any mind left.
I thought some of you might find this funny...if I go to bed before midnight...I get my midnight and 6am pill confused,
ie....have taken the 6am pill at midnight and the midnight pill at 6am...have missed taking the midnight pill altogether or last night was the cutest of all....I woke at 6am with the alarm and then awoke again at 630am with the pill in my left hand the my right hand on the bottle of water. Evidentally I did not take my 6am pill on time. This is getting to be crazy....but I can't seem to stay awake anymore until midnight so thus this new problem.
Otherwise no herx so far to speak of....out and about every day with family and no adverse reactions to sun and have actually enjoyed a fried egg once in a while and am still recovering nicely....would not suggest this until you are at least as far into MP as I am.
Have another month in Tennessee and then I will be returning to NM...they want me to move here but that is something I have to think about.
Hope everyone is proceeding well on the MP.
Hang in there, we will make it!!!!!!!!!!Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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BARNEY
Member in Phase 3
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Posted: Tue Feb 27th, 2007 21:59 |
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DAY 786, 2/27/07, PHASE 3, DAY 3, CYCLE 16/Z/D/C, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, 1 ACIDOP, NO PAIN PILLS, ALL TOLERABLE
I thought today (being day 3 of this cycle) would be what I call 'hell day', but no hip pain (great) and no leg pain. The only herx noticable today is an achey head for about 3 hrs but has now ceased and I feel good.
Helped move the hospital bed over to my daughter in law's dad's house (he has enfasema(sp?) and is having a lot of trouble breathing and needed his bed to be able to raise his head up. Was out about 3 hours in and out of the sun.
Sugar is the best it has been in months...it is now below 200. I found out that pound cake is low gylcemic...never dreamed that would be. I had a tiny piece of it with strawberries/bananas with sugar free glaze and a dollop of whipped cream, plus a grilled hamburger, small sweet potato with butter and cinnamon and a salad with a vingerette dressing. Was a great meal. Wish I could find a book that listed all foods as to whether they are low gylcemic or not. I have searched the internet for charts I am willing to print, but the foods are so limited on them.
It is so good to feel this great.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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BARNEY
Member in Phase 3
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Posted: Sat Mar 3rd, 2007 21:18 |
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DAY 790, 3/3/07, PHASE 3, DAY 7, CYCLE 16/Z/D/C, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, 2 ABX COMBO, 1 ACIDOP, NO PAIN PILLS, ALL TOLERABLE
Went to town to get groceries (just a few), then to the flea mkt and over to Donna's dad's house. Out about 4 hrs. in and out of the sun. No apparent problems from sun exposure.
I have what I feel is a herx....my middle finger on my left hand has hurt like a toothache ever since getting to Tennessee. Large toe and one next to it on right foot have a pain on some days that feels like someone drove a big screw thru where they join onto the foot.
Other than those complaints, all is well with hips/legs/lower back....which I am so grateful for. Was beginning to hurt so bad that I was contemplating cutting them off (only kidding,however it did cross my mind a time or two).
All is going so well with my health, it is just unbelievable....I love it....thanks MP.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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BARNEY
Member in Phase 3
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Posted: Sat Mar 3rd, 2007 21:32 |
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I keep meaning to thank you Janet and Sue from Indy for your wonderful thoughts. Here's to you passing that wonderful MP point. You will just be blown away at how great it feels.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
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Posted: Sat Mar 3rd, 2007 22:31 |
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Barney,
You might be able to do an 8-hr shift at night for sleep (10pm to 6am). That is a happy shift for me. I have a very noisy alarm on my phone for 6am and I have to move around to shut it off.
Glucose under 200 is good news! I have someone dear to me that will enjoy knowing that detail of someone who has been longer on the MP than me and is seeing some good results with MP and low Glycemic. Thank you for that!
Best to you Barney!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 631 |
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Posted: Sat Mar 3rd, 2007 23:34 |
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CONGRATULATIONS! You ARE making, Barney! I know that it has been long-awaited, and I am elated! Head north, and we'll celebrate!  Be careful and take care! . . . Carole 
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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BARNEY
Member in Phase 3
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Posted: Thu Mar 8th, 2007 22:02 |
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DAY 795, 3/8/07, PHASE 3, DAY 4, CYCLE 17/Z/C/D, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, NO ABX COMBO, 1 ACIDOP, ALL TOLERABLE
WHAT A WONDERFUL LIFE!!!!!!!!! I believe that was the name of a movie. Well, anyway, it is the way I am feeling about the past 3 months. MP has treated me well. I am able to almost perform like a 'normal' person. Thank you Trevor for all your hard work....it has certainly paid off for me.
I am feeling great...out and about whether it sunshines, is cloudy, or rains...you just cannot imagine how elated I am. I feel like I am floating on cloud 9.
I will not post for a few days after today as I am going to take a bus to the East Coast near Savanah GA to meet with a friend. I will tell you about it when I get back and how well I do on a bus for 14 hrs and the sun I will probably be in and I do plan to walk on the beach even if I have to do it after dark.
I am wearing short sleeve shirts, a denim long sleeve shirt from Cabel's (100% cotton) (an extra large so it does not fit tight to my skin), denim levis, socks, shoes and a hat along with my Noirs....no gloves (have not worn those for about 5 months now. Also no face cream (it burnt my face tooo bad). All of you MPers who have less than 19 months on MP, I would still suggest staying out of the sun as much as possible and still wear your gloves and a real big broad brimmed hat.
I sure have enjoyed my time in Tennessee....am not herxing real bad at all anymore. Maybe I should not brag, it will come back to bite me. Not bragging,,,,just so happy.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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BARNEY
Member in Phase 3
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Posted: Thu Mar 8th, 2007 22:04 |
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ps Carole...........thank you..........I will see if heading north is possible any ways soon.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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tom
Member in Phase 3
| Joined: | Mon Sep 12th, 2005 |
| Location: | New York USA |
| Posts: | 187 |
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Posted: Fri Mar 9th, 2007 03:01 |
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Barney,
Thank you for your recent post. It’s a great inspiration.
To your full recovery!
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Aunt Diana
Member Advocate
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Posted: Fri Mar 9th, 2007 09:49 |
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Barney,
I am so happy for you....it must feel like a miracle after all those years. I can just imagine.....actually I do a lot of that trying to get through the more difficicult times. It's only a matter of time.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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BARNEY
Member in Phase 3
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Posted: Sat Mar 17th, 2007 22:25 |
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Thank you Tom and Aunt Diana....just hang in there and you will reach the same great feelings I have....it was a hard 2 yrs but it is worth every minute of MP.
DAY 804, 3/17/07, PHASE 3, DAY 5, CYCLE 18/Z/C/D, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, NO ABX COMBO, 1 ACIDOP, NO PAIN PILLS, ALL TOLERABLE
What a trip!!! 14 hrs on the bus, mostly at night but part of it in the day time. I tried to sit on the side where the sun would not shine on me when it reached day time. Friend did not show but stayed with another friend and my son drove me home after a week. Had a great time with absolutely no problems with doing MP. It is a great life now. I would do this forever, if I had to.
I have reached the top of this combo, so I am dropping this combo to start a new combo. I will eliminate C and Z and pick up something new to see what 'bugs' that will kill.
Wow!!!! I just cannot believe how great I feel. And thank God....the hip and leg pain is gone. What a real blessing.
My step mom that I took care of for 7 months...passed away last Sunday nite and her funeral was Friday (yesterday). She had developed a brain infection. I don't believe she ever got well from that knee surgery she had...her liver count was never right after it. Dad is doing well...he is still in assisted living. I will go up and spend some time with him the first of April and then head home.
Hope all of you MPers are proceeding along on MP with great improvements. The first 2 yrs are the hardest.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Posted: Sat Mar 17th, 2007 22:31 |
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Barney,
So glad to read your posts. I am so happy for you..it has been a long haul but sounds like it is well worth it!. Congratulations on your continued success.
God Bless, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Toni D
Member Advocate
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Posted: Sun Mar 18th, 2007 07:36 |
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| Barney, congratulations. Your testimony is truly a blessing to all. You're deserving!
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 1,25D=38 07/07 25D=4| BeniQ6H 09/27/05| ModPh2 07/06; Ph 2 09/07|
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BARNEY
Member in Phase 3
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Posted: Tue Mar 27th, 2007 18:46 |
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VEZ and Toni D....thank you for your kind comments and I am always glad to report so that others can use it for their proceedings on MP.
HANG IN THERE, WE WILL MAKE IT!!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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TerryM
Member in Phase 1
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Posted: Mon Apr 2nd, 2007 05:30 |
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Barney,
I've been catching up on your posts and I'm actually crying tears of Joy for you as I know how sick you were! Its wonderful that your able to be so active now and eat so many more foods. Thank you so much for continuing to post here so that the rest of us can take joy in your progress and know what lies ahead for us!
BARNEY YOUR AWESOME! 
Terry
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Sarcoidosis/kidneys neuropathy in feet, Noirs Aug 05, Benicar 40mg q6h, Minocycline 50mg q12h
Renegel 3200mg tid, sodium bicarbonate 90gr, neurontin 600mg tid, Sodium Polystryrene sulfante 60ml q24h
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
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Posted: Mon Apr 2nd, 2007 16:48 |
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Barney,
My condolences for your step mother and your father at this time.
Best to you on your continued improvements. I still appreciate the time you spent with me at LAX to talk to me about your insights. Thank you so much for your help with my sister, too.
Thank you for your continued reporting on your recovery!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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BARNEY
Member in Phase 3
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Posted: Fri Apr 13th, 2007 14:25 |
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DAY 831, 4/13/07, PHASE 3, DAY 4, CYCLE 21/Z/C/D, BENICAR 20MG/Q3HRS, BENICAR 40MG/MIDNIGHT, NO ABX COMBO, 1 ACIDOP, NO PAIN PILLS, ALL TOLERABLE
So much has happened here in Tennessee that I am way behind in posting.
I had stopped this combo and then restarted it when I realized my body was telling me I was not done with it yet. Doing great, still able to do quite a bit and be outside a lot. Still long pants, shoes/socks, sometimes a short sleeve shirt and sometimes a long sleeve shirt, no gloves, broad brimmed hat....I have quite a collection now and several denim shirts and several hooded sweatshirts. (never wore a hat before MP or long pants in the summer)
Chris went into the hospital to have 6 fatty tumors removed from his spine plus a black mole (Thursday) and Matt (his brother) was admitted to the hospital 30 miles away from a bad infection (in his tonsils) he also had bronchitis and gastrious (sp?). His WBC was 20,000, which was not great. The doc said it should not be over 10,000. Well, to make a long story short...we all had to take turns sitting with both of them around the clock and I have never done anything more tiring in my life than sitting in a hospital with an ill family member.
We are all back home and everyone is recupping in their own homes.
I am exhausted and have done some extra sleeping...good thing I did not go home when I was supposed to. Will be going home in May.
I saw my old doc (at the hospital) that had diagnosed my kidney loss, ovarian problem and my gallbladder problem. Dicussed MP with him and whether he could work with me if I moved to Tennessee. He said I looked really good and that he would very much consider doing MP with me especially since I had already started year 3 and looked so good. He had stomach cancer (he is recovering from), plus he had hepatitis C from a needle stick from a patient and they over dosed him for that almost destroying his liver. Maybe he needs to do MP with me. I will send him paperwork whether I return to Tennessee or not.
Talked with 2 greatgrandbabies and what a boost to me. They are so sweet (4/3). Wanted to know when I would be arriving to visit with them. Think I will go that way on my way home.
I am planning to drive from about 5am until about 2pm and then get a motel room. Hope this trip does not do me in too bad. I should be able to do 500 miles per day and be in Albq to spend night with those grandbabies and then and then drive the last 250 miles home the next day. I am going to try this by myself this time. Hope all goes as well as I am expecting it toooo.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3877 |
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Posted: Fri Apr 13th, 2007 23:08 |
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Barney,
Thank you for your wonderful post. You do so much good. That poor doctor sounds like he is ready. Glad you could and did offer him the solution.
This week has been particularly challenging per health/hospital with my family too, so I really appreciated your perspective.--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Dody
Member in Phase 2
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Posted: Sat Apr 14th, 2007 18:23 |
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Barney,
Thank you for your posts, and bless you for your perseverence and your always-encouraging sign-offs. And congratulations for showing your TN doc why the MP is worth it. I'm a newbie in Phase I and your posts have been very encouraging.
Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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