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DThomas
Member in Phase 3
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Posted: Wed Aug 20th, 2008 00:03 |
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Hello All,
This is my first post in his forum and I'm glad to be able to post here. I've been on the MP for 22 months and wanted to give an update on my progress to date.
When I started my symptoms, pain, "just getting older" issues were: Fatigue, brain fog, migraines, insomnia, eye pain/dryness, joint pain-all over, left knee acute pain when walking, bottom of my feet hurt, voice was hoarse, sinus congestion, ear pain/fullness, TMJ, nose bleeds, air hunger, shortness of breath on exertion, back ache, acid reflux and bone pain.
My improvements so far are: No acid reflux after beginning phase 1, no migraine for about a year, no insomnia for the past 4-5 months, all over joint pain is gone, but joint pain continues with herx, left knee pain is completely gone now, feet don't hurt anymore, sinus congestion is controlled with a daily nasal wash and Mucinex occasionally, air hunger waxes and wanes with the meds and light exposure, no ear pain and fullness is controlled with Mucinex, no nosebleeds since the winter.
My voice was hoarse in the beginning and got progressively worse into phase 3. 6-9 months ago my voice was non existent, currently it is pretty good on most days, excellent on some and still week with the wax and wane of the meds.
Air hunger and shortness of breath continue, but to a lesser degree. I haven't had to use my inhaler for a while now.
All in all I see improvements in all areas-even ones I didn't know I had till I started the MP! 
That's all for now, more to come later!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Tue Aug 26th, 2008 23:49 |
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Monthly Update:
Phase lll 7/19/07...Cycle 43, Day 3 (That's 433 days closer to wellness!!)
Palliative meds: Systane dry eye drops AM and PM, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, chlortrimeton 4mg
Light exposure: Normal
Symptoms: Sinus drainage 6- , low back (days 3-6)- 1-3, fatigue - 3-7; Brain Fog - 4, cough - 4, dry eyes -3, SOB - 5; itchy skin on calves-2 at times. No broken skin or rash; Increased muscle & bone pain, in particular low back shoulder blades & collar bone. anxiety - 3; right knee pain-6, "sore to the touch" places on my back.
All symptoms are tolerable and expected. I have had to use my inhaler several times over the last cycle for SOB.
This cycle I have noticed a small increase in anxiety. No moodiness or depression, just a tense anxious feeling. The need to be creative/alone and rest is greater right now. So I'm doing just that resting more and having more creative private time.
And last, something is happening to the granuloma on my face, (I believe there is a technical name, but I'm not sure what it is) The area nearest my right eye feels bumpy. Before it was a solid half dollar sized raised area. I think the bumps are there because some of the area has less inflammation and the skin is turning a whitish color, almost a natural skin tone for me. In the center of the granuloma there is a larger area that is whitish. The whitish area there is "sunk" in or lower than the surrounding area. The whole area looks somewhat less swollen. Maybe one day my smile wrinkles will match! 
I'm going to stay at the same level of meds for the remainder of this cycle and at least one more then asses if I can increase. The increase will depend on the SOB and the anxiety level.
See you in a month!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Tue Sep 30th, 2008 17:26 |
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Phase lll 7/19/07...Cycle 46, Day 8 (468 moving forward towards wellness)
Palliative meds: Systane dry eye drops AM and PM, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, Gueifesen 1200mg Q12H PRN
Light exposure: Normal - except for a two day trip in the car.
Symptoms: Sinus drainage 5- , low back (days 3-6)- 1-3, fatigue - 0-3 Brain Fog - 3, cough - 4, dry eyes -1, SOB - 5; itchy skin on calves-2 at times. No broken skin or rash; Increased muscle & bone pain, in particular low back shoulder blades & collar bone. anxiety - 3; right knee pain-5,
All symptoms remain tolerable to almost unnoticeable. The only unusual symptom I had was a severe asthma like attack brought on I believe by stress. I had to use my inhaler 3x in less than an hour to get relief...the family was close to calling for help. I have had the same type of "attack" before just less intense and not as long lasting.
All skin granuloma's seem to be firm, dark read and painful if bumped or scratched. SOB is about the same and the anxiety level is down a bit. The extra sunlight exposure was a couple of days ago and I'll have to wait a few days to see if I have a sun flair; I hope not, I had a really great trip!
See you in a month!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Wed Oct 22nd, 2008 22:12 |
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Phase lll 7/19/07...Cycle 48, Day 10
There is much to report today! It's my 2 year anniversary on the MP. Can't imagine where I would be without it! For example: Two years ago I was driving around in a beat up old car and refused to purchase a new one; even though I got stranded several times a month. My reasoning...I was afraid that I was not going to live long enough to pay for a car and I didn't want to stick my family with a car payment. I had pretty much resigned myself to a short painful life. Then I found the MP. I did buy the car I wanted after I started the MP and I still love it! I guess it's my hope car!
I can't say that every step has been easy, but I can say that every step has been an improvement. I am one of the working MP folks and I have only missed a few days of work over the past 2 years. I missed a lot more prior to the MP. Somehow, even when I feel terrible I can keep going because I know feeling bad is temporary. And because I charted so much in the beginning I can pretty much tell you when I'm going to feel bad and when I'm going to feel better. Slow and steady is the way to get better!
I have to say that at about the 18 month mark I was really tired of living by 10 day cycles, soaking in sunscreen and sweating to death when I went outside, living in the dark and I really wanted to eat a great big plate of sushi! But shortly after that point I realized how far I had come and how many improvements I have made. So be encouraged if you are just starting out; if you are nearing the 1 year to 18 month mark it's tough, but it's so worth it! Time is going to keep marching on, and I'm glad that I can look back and see all the good things that have happened in the last couple of years, but most of all I'm glad I can look forward to the future.
I'm so glad I started the MP when I did. I'm thankful for all those folks on the board who forged the way and went through so much more than I have and have given me such wonderful guidance.  Man you guys sure are a patient bunch.
Thank each and every one of you for your encouragement and guidance, I'm sure I couldn't have done it without you!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Mon Dec 8th, 2008 05:46 |
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Phase lll 7/19/07...Cycle 53
MP meds: Benicar 40mg Q4H, Phase 3 meds
Palliative meds: Systane dry eye drops PRN, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, Gueifesen 1200mg Q12H (almost every day), diazepam 5mg once or twice in a 10 day cycle.
Light exposure: Normal
Symptoms: Sinus drainage 5- , low back muscle spasms 2, Brain Fog - 0-3, cough - 5, dry eyes -1, SOB - 5; itchy skin on calves-2 at times; anxiety - 3; right knee pain-2 larynx spasm - 4-6,sense of smell 10
Everything is moving slow and steady. I am experiencing a bit of fatigue, but I have been able to do more with less herx than in the past 2 years.
My recovery time when I over do is usually within a few hours and a the longest by the next day!
My voice changes can be charted pretty well now. My voice is near normal most of the time, maybe a little weak, but clear and barely hoarse on days 1-4 and 7-8. The other days my voice gets weaker after about 6 hours after the abx's and gets better around 24 hours after the abx's.
I can feel the change in fatigue, voice, emotions, brain fog and anxiety when I take the abx dose within 6-8 hours, but nothing has gone past intolerable and most have not reached even a 5 on a scale of 1-10.
I try very hard to rest a lot on the day that I take the abx dose. This pattern of increase seems to be working a lot better than this time last year.
My sense of smell is completely absent right now. Other than a few whiffs of an acidic smell when nothing is there I can't smell a thing.
See you in a month!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Fri Feb 27th, 2009 12:59 |
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Phase lll 7/19/07...Cycle 60, Day 6
MP meds: Benicar 40mg Q6H (or Q4H if needed), Phase 3 meds
Palliative meds: Systane dry eye drops PRN, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, Gueifesen 1200mg Q12H, diazepam 5mg once or twice in a 10 day cycle.
Light exposure: Normal
Symptoms: Sinus drainage 6 , low back muscle spasms 4, Brain Fog - 6, cough - 5, dry eyes -1, SOB - 5; itchy skin on calves-3; anxiety - 6; right knee pain-2 larynx spasm - 4-6, sense of smell 10; voice - 1, achy all over feeling - 6
I have had 2 full cycles at the the current level. All symptoms increased at this dose. Fluish achy feelings, fatigue, moodiness are all worse.
I'm back to doing very little except going to work. I am taking extra benicar as needed and have no herx that is intolerable. Also, I'm back to a plain/bland diet for a few weeks, along with very restricted activity levels. That always seems to help when the herx gets stronger.
On a positive note-I see such progress, my voice, which was no-existent last year at this time is almost completely normal! I was hoarse or unable to speak for about 10-12 months. It was a really tough time for me. I would say now I sound like myself about 95% of the time...I can even yell at the kids again! Not sure they like it, but I sure do.
My skin sarc is worsening and I take that to mean that there is a lot going on in that area...let the healing begin!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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BARNEY
Moderator
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Posted: Fri Feb 27th, 2009 15:27 |
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Debra,
You are doing so well, it is a real treat to read your progress.
So happy for you that your voice is back (you have 10 months of screaming at the kids to make up for lol)
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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DThomas
Member in Phase 3
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Posted: Wed Apr 1st, 2009 16:59 |
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Phase lll 7/19/07...Cycle 66, Day 9
Day 9 & 10 remain the worst cycle days. All symptoms/herx seem to be more controllable and less intense with this last cycle.
I have been nauseous every few days, lasting a couple of days for the past month or so. And the result is my weight is down to 139. I'm eating on the days I feel sick to my stomach, just very bland, light food. My calorie intake is pretty stable week over week, but day to day there are some wide variances due to the tummy discomfort. Just one more area that needs some healing work.
I also have many more skin lesions on my arms, right check, and right hip. They are not weeping, but are firm, hot, and hurt if one of them gets bumped. Since I have experience with my voice going away and coming back, I assume the same thing is happening with the lesions...getting worse before they get better. I'm looking forward to the "better."
Sure does make it easier to face current symptoms when the past has shown such improvements!
See you in a month!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Tue Aug 11th, 2009 11:58 |
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Phase lll 7/19/07...Cycle 78, Day 7
Palliative meds: Systane dry eye drops PRN, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, Gueifesen 1200mg Q12H PRN, diazepam 5mg PRN - once or twice a month.
Light exposure: Normal
Symptoms: Sinus drainage 5, low back muscle spasms 3, Brain Fog - 3-4, cough - 3, dry eyes -1-2, SOB - 3; anxiety - 3-5; larynx spasm - 1; sense of smell 9; voice - 4, achy all over feeling - 2; nausea - 1-2: gag reflex - 4
IP level at an overall 1-3. Nothing intolerable and the average is definitely a 2. I could increase now but, but I have a couple of stressful situations going on right now, I'm going to stay where I'm at for a few more cycles before I increase. le.
Making progress !! See you in a month!
Debra
Note: (I have 11 granuloma's on my arms, 2 on my face) The granuloma's on my arms are changing, the"norm" look for them is a very dark purple in the center moving to a dk pink on the outside edges, each one has a central area that feels like a large bump under the skin.
It appears in about 4 of the granulomas that the center bump is breaking up into many smaller bumps. The center is no longer defined as one bump and the color has changed to a lighter pink when touched you can feel the smaller bumps, like they have been squeezed through a sieve almost.
Last edited on Tue Aug 11th, 2009 07:45 by DThomas
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Wed Sep 16th, 2009 16:44 |
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Phase lll 7/19/07...Cycle 81, Day 2
Symptoms: Sinus drainage 5, low back muscle spasms 3, Brain Fog - 1-2, cough - 3, dry eyes -1-2, SOB - 1; anxiety - 1; larynx spasm - 2; sense of smell 9; voice - 1, achy all over feeling - 0; nausea - 1: gag reflex - 1
IP level at an overall 1-3. Nothing intolerable and the average is definitely closer to 1. Next cycle I'll be adding Clindy on day one with Z.
A noticeable improvement in my light tolerance. . .I think. On cloudy days I am having to partially open the blinds to be able to see my work. And, I don't get the knife in the eye feeling when I go outside on sunny days. My regular glasses are slightly tinted and are the photo gray ones which darken in the sun very quickly. Sometimes I have been halfway home from work before I realize I didn't put my sunglasses on.
Making progress !! See you in a month!
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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DThomas
Member in Phase 3
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Posted: Wed Dec 2nd, 2009 14:11 |
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Phase lll 7/19/07...Cycle 88, Day 6
Palliative meds: Systane dry eye drops PRN, Wellbutrin 150mgQ12H, Tylenol 500mg once or twice a cycle, Proventic inhaler (albuterol)PRN, Gueifesen 600mg Q12H PRN, diazepam 5mg PRN - once or twice a month.
Light exposure: Normal
Symptoms: Sinus drainage 5, low back muscle spasms 3, Brain Fog - 1-2, cough - 3, dry eyes -1-2, SOB - 3; anxiety - 1; larynx spasm - 5; sense of smell 9; voice - 2, achy all over feeling - 0; nausea - 1: gag reflex - 1
Well, I'm almost at the top level of the 3 abx's of phase 3! In comparing the last few years I can honestly say that I am 100 times more healthier than 4 years ago.
Four years ago I had a miserable Christmas because I felt so bad. It should have been a very happy time since I got married on December 11th that year (2005).
In April I began taking 60 mgs prednisone for a few months due to sarc in my throat. I gained about 40 pounds or so and felt horrible. Then miraculously I found the MP! It took me until October 2006 to find a doc that would work the MP with me.
In October 2006 I began taking Benicar and moved progressively from there. Christmas 2006 was filled with hope of a cure for sarc, something I had never had before. Though I had already began having IP's they were a welcome sign that I was doing the right thing. Christmas 2006 was still difficult physically and I really did all my shopping on-line. Not much involvement in the holiday or family activities. I enjoyed them all, but was not very well. The hope of a cure carried me through.
Christmas 2007, beginning year 2 on the MP, I actually got up early the day after Thanksgiving, really early, and took my Mom to the local mall shopping. We were only out for a few hours, but what a joy to be able to handle a few hours shopping with my Mom. Of course, I had to take a long nap in the afternoon that day, but it was worth it. Although I had all the "normal" IP's my worst IP in the 2nd year was my voice. I became progressively hoarse until there were days when I had to work to speak.
Christmas 2008, beginning year 3 on the MP, well my day after Thanksgiving shopping was even better. I didn't get up as early, but I was physically able to shop all day. I got tired after about 6 hours and a lot of brain fog set in, but what an improvement compared to 2007. I still didn't have a voice and that was really frustrating; I began to think it would never return to normal.
Now for this year - Well, I shopped all day the day after Thanksgiving, from 7:00 AM till around 6:00 PM. I was "normal" tired. No brain fog, just tired feet. I went shopping on Saturday too. I haven't been able to do that in so many years I can't actually remember the last time. I got home on Saturday and began decorating the house, something I have not done in a few years. Typically, each one of the 3 kids takes a job and does it while I sleep or sit and watch them.
I did not take a nap on any day of the Thanksgiving weekend, I was on my feet for 2 days straight and most of Sunday. Of course I got tired, but my recovery time was so in the normal range that I am still amazed!
I also was able to do a lot of pre-Thanksgiving preparation. I worked Monday-Wednesday at my job and then made several cakes and other goodies when I got home each night. What a blessing to be able to be so engaged with my family. I feel like I have been given a second chance at life.
My voice, while not quite normal all the time, began to clear around March of this year (2009). I did have some hoarseness as soon as we started using the heat, but a humidifier fixed that. Every day when I speak and my voice is clear I am so surprised and very thankful to God and to the MP.
This update has only measured two aspects of my road to recovery, my stamina year over year and my voice/throat improvements year over year. If these were the only two improvements the MP would be worth it, but there are so many many more.
Thank you Dr. Marshall and the MP for giving me my life back.
Debra
____________________
Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Dec 2nd, 2009 16:53 |
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BARNEY
Moderator
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Posted: Wed Dec 2nd, 2009 23:32 |
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Oh Debra,
What a wonderful report!!! Glad you are enjoying the holidays again!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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ChrisMavo
Member in Phase 2
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Posted: Thu Dec 3rd, 2009 07:03 |
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Debra,
Thanks for such an uplifting report! It is success stories like yours that sustain me here in the early day of the MP. I am still experiencing the worsening of the IP... but after hearing your story of such progress I too hope to be back to holiday chores with the family in a year or two! My wife even said she is going to start planning a trip to Italy for my 60th birthday in almost exactly three years... something to shoot for!
Happy Holidays and thanks for sharing!
____________________
PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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