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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Fri Sep 3rd, 2010 15:47 |
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Date and time: Thurs. March 1 at 7pm UPDATED
Location: 2nd Floor, Myra Mahon Patient Resource Center, 1305 York Avenue (at East 70th Street), New York, NY
Public transportation: Try hopstop.com
Driving: Street parking is definitely not a sure thing. There are parking garages both east and west of York Avenue along 71st Street.
Topics for discussion: Whatever people want to talk about except herxing. You may not complain about herxing. (Just kidding)
Amy Proal and I will host a get together for anyone who wants to talk about the MP here in New York City. So far, we've heard from one person, but this is open to anyone. The Patient Resource Center is a really nice space.
If you have questions, you can ask here or email me at palbert1@gmail.comLast edited on Sat Feb 25th, 2012 19:37 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Aunt Diana
Support Team
| Joined: | Fri Sep 30th, 2005 |
| Location: | Boquette, Panama |
| Posts: | 1986 |
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Posted: Sun Sep 5th, 2010 21:21 |
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| Wow!! I wish I could go....but just FYI I sent an invitation to my brother, who is a doctor in NYC and a real doubting Thomas; doubt he will show up, but hope he might. I hope this is OK. He has a real ax to grind about the MP...refuses to believe me...I hope and pray he will show up.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Sun Sep 5th, 2010 21:32 |
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Hi Diana,
I'm not sure a support group is the best place for someone to become convinced of the usefulness of the MP. The group is generally intended for people on the MP or prospective patients. Maybe another setting would be more appropriate for connecting with your brother.
Best,
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Aunt Diana
Support Team
| Joined: | Fri Sep 30th, 2005 |
| Location: | Boquette, Panama |
| Posts: | 1986 |
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Posted: Mon Sep 6th, 2010 03:02 |
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| Thanks Paul. I will let him know...although there's little chance he would have gone anyway.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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bethers
Member
| Joined: | Mon Mar 9th, 2009 |
| Location: | Connecticut/NYC |
| Posts: | 42 |
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Posted: Tue Sep 7th, 2010 02:14 |
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Ill be there!
Beth
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Lyme? (clinical dx Jul07) CFS? fatigue on and off since 1997; cognitive, memory, verbal & word finding issues since Aug07. MPJan09, ModPh2Mar09, Ph2Aug09, BenOnlyJan10. SCDietMar10. 125D:49, 25D:45 Aug08; 25D:18 Jan09; 25D:16 Mar09; 25D:10 Aug09.
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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Tue Sep 7th, 2010 14:48 |
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See you there, Beth! Beyond Amy and me, there are now three people who have committed to attending.
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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minski2
Member
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Posted: Wed Sep 8th, 2010 13:09 |
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Hi Paul,
I too wish I could be there.....have a co-op on E.70 and used to work at what was
NY Cornell Hospital. Hope it is a great success so you will do it again!!!!!
Dian
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PTLDS,Hashimoto's Disease:INT.1-25D38,25D37;PH1Sept09,PH2Nov09,PH36/1/10 ;current 25D-6.3
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Chris
Support Team
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Posted: Wed Sep 8th, 2010 22:42 |
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I'll do my best to get there ...
-- Chris
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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gart
member
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Posted: Fri Sep 10th, 2010 20:35 |
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I'll do my best to get there .Probobly with my wife.
Thank you
Gene
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MP Feb'08-May2012 (no breaks) On break frm May 2012| Lyme | burning neuropathy entire body, muscle/joint pain, TMJ, blurring vision, noise sensitivity | 125D=51, 25D=40, Aug'07 | 25D=11.2 ng/mL April'11 Oct 2012-12.8ng/ml,Jan 2013-19ng/ml1.25D-73
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k
Member
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 785 |
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Posted: Sat Sep 11th, 2010 02:51 |
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Hi Paul and Amy
I would love to be there....'cept it's a bit of a trek from Australia! You are both huge inspirations to me! (partly because my diagnosis was also CFS/ME, even though we are all Th1 inflammation)
I would really like to hear an update on how you and Amy are going. Clearly, you are both leading very busy and active lives thanks to the MP. There is no question about that. I've read your stories at bacteriality, and your threads on this site.
But I would be really interested to hear about your experiences of years 4, 5 and 6 of the protocol...specifically Benicar and abx dosing. Presumably you both still take Benicar around the clock.... what about on the abx front? I know that the Benicar does all the heavy lifting and the abx just help things along... but have you worked through all the abx by yet?
Also, have either of you tried any periods of no Benicar? I appreciate that many people continue on because they continue to get benefits and heal, but just curious. (In particular, because I would like to have children one day, which will mean coming off Benicar).
I am approaching my 3 year anniversary on the MP, and would really appreciate and benefit from you sharing your experiences.
Regards,
k
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CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1.Oct07 Ph2.Feb08 Ph3.Sept08 BeniOnly.Aug09 MinoRestart.Dec09 |25D=50(Jul07) 23(Oct07) 13.2(Jan08) 12.8(Oct08) 10(Sept09) 12.8(Jun10) 12.4(May11) 8.3(Apr12)
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norman
member
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Posted: Tue Sep 14th, 2010 22:58 |
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| hi...I may try to get there...is it still on ?
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Sarc| Ph3 approx 6/1,Acne/ increase skin lesions, anxiety/depression /High IgG and Iga for C. Pneumoniae,last d= 10
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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Tue Sep 14th, 2010 23:00 |
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K: Hi, I'll be happy to respond to your question. Please be patient, okay?
Norman: Of course! We would be happy to have you join us.
Best,
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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k
Member
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 785 |
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Posted: Tue Sep 14th, 2010 23:39 |
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Thanks Paul. No worries. I'm patient!
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CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1.Oct07 Ph2.Feb08 Ph3.Sept08 BeniOnly.Aug09 MinoRestart.Dec09 |25D=50(Jul07) 23(Oct07) 13.2(Jan08) 12.8(Oct08) 10(Sept09) 12.8(Jun10) 12.4(May11) 8.3(Apr12)
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gart
member
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Posted: Thu Sep 16th, 2010 15:18 |
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We defenetly will be there!
Gene
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MP Feb'08-May2012 (no breaks) On break frm May 2012| Lyme | burning neuropathy entire body, muscle/joint pain, TMJ, blurring vision, noise sensitivity | 125D=51, 25D=40, Aug'07 | 25D=11.2 ng/mL April'11 Oct 2012-12.8ng/ml,Jan 2013-19ng/ml1.25D-73
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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Thu Sep 16th, 2010 15:29 |
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Anyone who has trouble, call me. I won't be checking the phone until later in the day though.
See you all there.
PaulLast edited on Fri Sep 17th, 2010 18:19 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Daniel
member
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Posted: Fri Sep 17th, 2010 03:44 |
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It was great meeting you all.
Feel free to message me. I'ts nice to hear from others on the MP. Perhaps we could even chat sometime on aim.
Best of ip's.
Daniel
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Sarcoidosis (disputed) lung nodules, Fatigue, Joint pains, GI symptoms/ Phase 1 - Sep 26th, 2008/ Phase 2 - December2 2008 ; ACE 74 [04/07/2008]; (1,25 D) - H 74; (25 D) 16 [9/22/2009] ; NOIRS, Generally no Sun exposure
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paulalbert
Research Team
| Joined: | Fri Jul 16th, 2004 |
| Location: | New York USA |
| Posts: | 1022 |
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Posted: Fri Sep 17th, 2010 19:19 |
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Thank you everyone for an excellent meeting.
Our group was a diverse one, including several newbies and a bunch of old hands. Including Amy and I, 12 of us showed for what I hope will be the first in a series of meetings. We spent three hours talking.
For those of you who couldn't make it this go around or didn't get enough time to share, I hope we can have another one in late October.
Best,
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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gart
member
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Posted: Fri Sep 17th, 2010 21:09 |
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Thank You Paul and Amy for your time and effort to organise this meting.I think it was useful for all of us.
Gene
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MP Feb'08-May2012 (no breaks) On break frm May 2012| Lyme | burning neuropathy entire body, muscle/joint pain, TMJ, blurring vision, noise sensitivity | 125D=51, 25D=40, Aug'07 | 25D=11.2 ng/mL April'11 Oct 2012-12.8ng/ml,Jan 2013-19ng/ml1.25D-73
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Sep 18th, 2010 00:38 |
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If there are any members in other parts of the world who would be able to hold local meetings like this from time to time, please let us know.
I will be traveling to Stockholm, Oslo, Bergen and Heidelberg to meet with Physicians and Patients in about three weeks 
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ChrisMavo
Member
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Posted: Sat Sep 18th, 2010 01:08 |
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Sounds like a very enlightening "road trip" Dr Marshall! Keep up the fantastic work spreading the word! 
And for those of us back at home ... take some good videos for us ... PLEASE?
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609,11/2012 25D-12, 11/11: 25D-10, 04/11: 25D-11, 07/10: 25D-13, 05/10: 25D-15, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino
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