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jvalston
Member
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Posted: Wed May 20th, 2009 02:19 |
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I have taken my time and done the research, read and printed all required reading, watched videos and even took some time to read other's post of their experiences with the protocol on the MP site.
Well today after being very excited about the possibility of getting started on a cure for my Th1 disease, printing off all the ph1 papers, letters and graphs and being prepared for weeks I saw my internal medicine dr today. I was so sure that he would see the logic along with the fact that I was so well prepared ,that he would embrace the possibility of a cure. As you can imagine as I have read others post, he didn't he acted like I was trying to sell him something. In fact he would'nt even listen to what I was saying he kept interupting me saying where did I get this information. I knew there was no hope when he said that sarcoidosis was'nt a Th1 disease it was an autoimmune disease not caused by bacteria that sarcoid had no cause or cure and what type of bacteria did I think I had?
In conclusion he wanted to start doing the same test that I had gone through for the last 20+ yrs reintroducing meds and seeing specialist again NOT! Which to me felt like a slap in the face. By the time I completed seeing all the specialists he had listed it would be another 20 yrs.
I gave him a chance as suggested by the site and now its time to move on and get started getting healthy!
I think that he was intimadated that in 1yr I had gotten weaned off all those nasty meds, avoided vit d, changed my diet lost 26lbs by doing the things suggested by the MP. I had to because I could'nt function as a new grandma all zoned out and overweight
Well I'm not going to give up. I have seen the light at the end of the tunnel and its calling me to be healed.  It is time for these bactiria to die!! so I can live.
Last edited on Wed May 20th, 2009 02:38 by jvalston
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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DNStog
Member
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Posted: Wed May 20th, 2009 02:55 |
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Sorry you received the response you did from doc, but you are in good company. Many of us MP patients were shut out by our doctors. Now my PCP who refused me is blown away by my improvements. I still go to him for two reasons: 1. I've gone to him for over 20 years and 2. I wanted to educate him correctly in the MP science.
Fortunately I did find another doctor willing to try the MP. He practices internal medicine but specializes in hypertension and very educated on Benicar so had no problem in trying it out. Now he has a lot of patients on the protocal with various diseases. He now tells his MP patients he KNOWS he can cure Sarcoidosis.
Keep on trying--good doctors allow you to come in for interviews without charging. At least that's been my experience in Atlanta.
Regards..Donna
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MP started 12-27-04
Sarcoidosis Systemic/Uveitis/ Hypothyroidism/ Raynaud's Phen/Paraesthesia/rhinosinusitis/ asthma/depression
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jvalston
Member
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Posted: Wed May 20th, 2009 04:02 |
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THNX for the encouragement. I will continue my quest for an MP doctor.
I have only been seeing him for 5 of the 20+ years. I guess you really find out a lot when you speak up about your health and don't just blindly take what they say as all there is.
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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Barney
Support Team*
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Posted: Wed May 20th, 2009 05:32 |
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Did you request a doctor at the top of the Ask you Questions Site....Carole just might help you out with some possibilities?
HANG IN THERE, WE WILL MAKE IT!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 379 |
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Offline
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Posted: Wed May 20th, 2009 05:58 |
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jvalston,
I like your spunk and determination. You no doubt have what it takes to make it on the MP.
I've had to find a doctor twice now and now for the 2nd time my doctor is closing his practice (he's going to work for a couple of nursing homes), and so I am facing my 3rd search for a doctor who will do the MP.
All of us on the MP are proof that it can be done!
Best wishes, Claire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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jvalston
Member
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Posted: Wed May 20th, 2009 22:59 |
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Thank you very much Barney
Yes I have made 2 request one even for alabama as that's not as far as south florida. It's just hard to narrow them down when they are all located in south florida. I will continue down the list I was trying to minimize the 7-9 hr trips down to one or two trips before I found gold in my search. You don't get much info on the phone.
Last edited on Wed May 20th, 2009 23:31 by jvalston
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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jvalston
Member
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Posted: Wed May 20th, 2009 23:23 |
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Thank you eClaire for you encouraging words. I am determined that with this information I will beat this disease. 20+ yrs is a long time to have unwanted guest
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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jvalston
Member
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Posted: Wed May 20th, 2009 23:26 |
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| Woo hoo! my checklist is getting smaller I got my Noir's today, both 10% and 2%. Life is great.
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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Barney
Support Team*
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Posted: Wed May 20th, 2009 23:33 |
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That is fantastic news!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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jvalston
Member
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Posted: Tue Jun 9th, 2009 23:21 |
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I noticed when I sarted to eliminate D and sunlight exposure my old sarc dry cough returned with a vengence even before the benicar.There was also very sharp chest spasms which I could'nt tell if it was lung or muscle, light sensitivity, headaches and irritability I just took extra benicar and after about 2 weeks it has calmed down enough for me to update my progress. I finally found a nurse practitioner to follow me on MP.Got lab's and scripts started BENICAR ONLY Q4-6H.
I would like to have my post changed to Victoria's journey if I can?
thank you to all the mper's posting it really helps us coming behind you to know that what we are experiencing is to be expected and not to panic.
I decided to try and do benicar only for as long as I can to try and get my d levels down as much as possible and learn all that I can about my body. It took over twenty yrs to get like this I want to benefit from recovery as much as possible. Plus I don't want to have unexpected ip's get out of control.
I am just so thankful that there is a way out!
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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Barney
Support Team*
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Posted: Tue Jun 9th, 2009 23:41 |
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Victoria,
You sound like a very wise young lady....waiting for 25D to come down you will continue on Benicar only.
We try to get people coming on to MP, to have their Benicar in hand just because of what happened to you when you stopped Vit D from food and sun.
Changed your post at your request.
Drink plenty of water, xtra salt (sea) (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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jvalston
Member
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Posted: Tue Jun 9th, 2009 23:49 |
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Barney,
Thank you very much. I noticed this trend from reading others post. I guess after all the other things you try along the way to get relief you just don't think that these simple changes can make such a drastic change in your body so quickly. But it does and did for me. I was down for weeks. I think it pushed me with passion to get a dr ASAP
Victoria
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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jvalston
Member
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Posted: Tue Jun 16th, 2009 16:59 |
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Updating: I have recently ran into a problem and thought I would let others know. I have or should I say had Uninted health care for my drug plan. they have denied payment request for Benicar three times. First they kert saying that they never received the letter of medical necessity,so I got the signed copy from Dr and faxed it in myself.Then Dr. called to request a medical provision. It all was denied. The reasons I received from rep.
1. they only cover 1.005 per day
2. not a FDA approved drug for sarcoidosis
3. FDA hasn't approved the dosage that Dr. reccomends
4. diagnosis needs to say hypertension which then goes back to one per day.
I refuted everything she said with all the information I studied on the MP site which made the rep very upset that she was being told she was wrong. I asked for the decision and the policies that were quoted in writting she stated that was not possible the denial stands they will not pay and to file an appeal in writting or by fax. Well this upset the Dr. who doesn't know much about MP, but was willing to write scripts so now I have to find a new Dr. that may be able to better help me with MP and sarcoidosis.
I am lucky that I had some Benicar stocked up from samples and am dual eligible so I can change drug plans anytimeand only have to wait one month for coverage, but for those who are not stay away from UHC. They seem to be just as bad as Medco. I also found in my search that if the company covers Benicar with no restrictions it didn't cover mino and if it covered mino it didn't cover Benicar that seemed lke to much of a coincidence to me.I hope this spares someone else the frustration of hitting a brick wall of drug coverage while trying to heal.
Victoria
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 379 |
| Status: |
Offline
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Posted: Tue Jun 16th, 2009 17:19 |
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Victoria, I hope you have a plan that will cover your Benicar.
In Virginia, the amount of Medicare Advantage Programs are limited and none of them will do the trick and so I stick with the company I have (because it has a limit on out of pocket costs and I get a free membership to a local gym, which I plan to be well enough to use one day to help me regain muscle tone as I feel better). For those who cannot find insurance coverage, there are always the online pharmacies.
Good luck Victoria!
Claire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Barney
Support Team*
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Posted: Tue Jun 16th, 2009 19:56 |
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jvalston wrote: Updating: I have recently ran into a problem and thought I would let others know. Victoria, we have been dealing with this treament of our meds since before I began in 1/05....nothing new at all.I have or should I say had Uninted health care for my drug plan. they have denied payment request for Benicar three times. First they kert saying that they never received the letter of medical necessity,Did you use the letter of necessity from our site and if you did...did you change any of the wording of it? so I got the signed copy from Dr and faxed it in myself.Then Dr. called to request a medical provision. It all was denied. Nothing new!!!! The reasons I received from rep.
1. they only cover 1.005 per day Usually they only cover 1 a day.
2. not a FDA approved drug for sarcoidosis FYI....neither has prednisone, isn't that strange that they will give you hundreds of those pills with no problem whatsoever. FDA has found no problem with anyone taking as high as 320mg per day for any reason.
3. FDA hasn't approved the dosage that Dr. reccomends FDA has found no problem with anyone taking as high as 320mg per day for any reason. MEDCO/UH just does not want to pay for it!!!
4. diagnosis needs to say hypertension which then goes back to one per day. No it does not...it does not need to give diagnosis.
I refuted everything she said with all the information I studied on the MP site which made the rep very upset that she was being told she was wrong. I asked for the decision and the policies that were quoted in writting she stated that was not possible the denial stands they will not pay and to file an appeal in writting or by fax. Well this upset the Dr. who doesn't know much about MP, but was willing to write scripts so now I have to find a new Dr. that may be able to better help me with MP and sarcoidosis. You might as well drop the effort, it will not work, however, I was able to get 4 Benicar per day, which is the minimum you need to take from Aetna. Since you can switch companies, I would suggest them. They did it for me for the first 3 yrs of MP. I used the letter of necessity from this MP site and changed nothing but putting the addition of Mino and my name on it. My doc thought it was a great document....she signed it....and sent it to Aetna for me. I hope this helps but if not....you may have to buy out of pocket from Canada. You will still need a scrip. http://www.canadageneric.com is 65 cents per pill including shipping and http://www.NorthWestPharmacy.com and http://www.planetdrugsdirect.com are approximately 85 cents per pill
I am lucky that I had some Benicar stocked up from samples and am dual eligible so I can change drug plans anytimeand only have to wait one month for coverage, but for those who are not stay away from UHC. They seem to be just as bad as Medco. I also found in my search that if the company covers Benicar with no restrictions it didn't cover mino and if it covered mino it didn't cover Benicar that seemed lke to much of a coincidence to me.I hope this spares someone else the frustration of hitting a brick wall of drug coverage while trying to heal.
Victoria I take 240mg per day plus depending on IPs. Barney
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Toni D
Member
| Joined: | Mon Oct 15th, 2007 |
| Location: | |
| Posts: | 25 |
| Status: |
Offline
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Posted: Tue Jun 16th, 2009 20:21 |
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Victoria,
If you can find Benicar coverage, I would suggest you take it and then just purchase Minocin out of pocket. As a matter of fact, you can get the generic minocycline. I just ordered one hundred 25mg capsules from the compounding pharmacy and it's costing me $80. Someone else may be getting it for less and I'm sure they'll chime in and let you know.
Feel good and be blessed.
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Barney
Support Team*
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Posted: Tue Jun 16th, 2009 21:01 |
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Toni & Victoria,
If your doc orders enuf Mino at one time.....Aetna paid for mine besides the Benicar, but if you can't get it...do like Toni said or you could check the Canada pharmacies and see what their price is.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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jvalston
Member
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Posted: Thu Jun 18th, 2009 14:40 |
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Claire
Thank you. Yes I have chosen a plan that covers benicar unlimited, no authorization or step therapy. it starts july 1. It should be fine and I have scripts for 9 mos to find a mp doctor. I will use online pharm for mino purchase.
Victoria
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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jvalston
Member
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Posted: Thu Jun 18th, 2009 15:08 |
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Hi Barney,
Yes I used the mp letter for sarc only adding my name.
I don't know what the .oo5 is if you drop one lol
I stated that about the FDA approval of 320mg for any reason.
I filed 2 more complaints one with medicare again and another with state Ins commission. Well today they called back to see if they could get me a medical exception approved we'll see  they seemed to be a little more receptive to helping me. I am still on to greener pastures I thought I would yell a little louder for those coming behind me.
Victoria
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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jvalston
Member
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Posted: Thu Jun 18th, 2009 15:11 |
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Thanx Toni,
I will do that for mino. What compounding pharm do you use? I got enough mino to last me 9 mos. but will need more later.
Victoria
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DX:92Sarc,spine,lungs,neuro,fm,cfs,5/09:25D 19.5,1,25D:87.2 8/09 25D 7. 7/09 Benicar 40mg q4-6hr.Mino 100mg q48h cave home.Noirs,low lux.
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