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JohnMcC
registered
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Posted: Sat Aug 30th, 2008 18:43 |
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Hello All,
Sorta missed the study cohort, but that doesn't matter - those guys have enough on their plates....
I've been lurking, learning and occasionally posting all the way back to Sarcinfo.org and finally I get to start my own MP journey - hopefully not too much of a "trip"... 
Diagnosed with Sarc early 93 suffered the indignity of prednisone for 4 1/2 years and quit that. Since then I've been searching for answers that my medical "professionals" could not answer. I was even removed from a "specialsts" office for daring to question his ability if he didn't know what caused the disease, treated only with prednisone(which is acknowledged by many pulmonary folks to be the wrong choice) and still held the belief that Sarc just goes away on it own.......ask Bernie Mac (RIP) about that one..... He trashed the MP incidentally...
Life goes on...
I met with my MP Doctor yesterday - was very impressed with his down to earth attitude and willingness to help me through - I went through the usual chest x-ray, ECG,Breathing test + the all important D tests all in a couple of hours to provide baselines - came away with the scripts for phase 1 and the order has been made to Yetvart in Montreal. I have my noirs and have made some workplace requests for an office cave, watchin' what I eat...the usual prep.
I'll post my latest results once I get them and I hope to actually start the MP within the next 10 days.....
I look forward to regaining my health, sharing my journey as many have done.
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Aunt Diana
Support Team
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Posted: Sat Aug 30th, 2008 23:57 |
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| Welcome aboard, John.
____________________
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
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Freddie Ash
Member
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Posted: Sun Aug 31st, 2008 01:42 |
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HI JOHN
This is Fred in WV. I to want to welcome you on board of this great ship on our journey to a full recovery of which ever TH1 disease each one of us have. Remember, the Marshall Protocol is the only treatment that offers the cure not just another treatment to be on the rest of our lives. Yea! Yea! for Dr Marshall and the whole over worked staff here for the Marshall Protrocol.
Remember, when we are herxing, we are getting well, when we were not on the Marshall Protocol we still had symptoms(just like herxing) but we were getting worse not well.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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marion villa
Member
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Posted: Tue Sep 2nd, 2008 03:49 |
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Will be a "trip", for sure....
But it is worth every inch of it.
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Deb Grabetz
Support Team
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Posted: Tue Sep 2nd, 2008 12:31 |
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Hi John,
Welcome! It looks like, from reading your post...You've taken all the usual routes to getting well from sarc, only to find they were not taking you where you wanted to be. I so understand this journey! Glad to see you'll soon be on the right road to recovery with the MP! It's a challenging one with valleys, bumps, hills and more, but over those final mountains is one beautiful sunset! Be Well, Deb
 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Julia
registered
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Posted: Wed Sep 3rd, 2008 09:48 |
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Sunrise, Deb! John, today is the first day of the rest of your life 
Bon voyage 
Julia 
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Freddie Ash
Member
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Posted: Wed Sep 3rd, 2008 13:24 |
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HI JOHN & ALL
This is Fred in WV. Julia, that reminds me of a saying that I use to hear on a local radio in the mid 1950s when I would listen to the top 10 songs for the week. The disjocky would say, "TODAY IS THE TOMORROW THAT WE WORRIED ABOUT YESTERDAY." Also, 3 or 4 years ago I was visiting a friend in a local hospital and went to lunch there and saw this same saying on the bulleting board there in the lunch room.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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expate
Member
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Posted: Wed Sep 3rd, 2008 16:57 |
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Welcome John. You'll get lots of support here. There are many generous and knowledgeable people here.
Love those stylin' NoIRs!
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Markt9452
Member
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Posted: Thu Sep 4th, 2008 01:17 |
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Welcome aboard and Good Luck John
Mark
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Th1 Lyme 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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JohnMcC
registered
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Posted: Thu Sep 4th, 2008 01:44 |
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Hello Everyone,
Thanks for the warm welcome.
I feel like a 5 year old waiting for Christmas morning - waiting for my benicar to come...
Sure enough, in a few weeks the bugs will feel different..
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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thelymelight
Member
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Posted: Thu Sep 4th, 2008 17:21 |
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Hello John,
Welcome aboard,
Ah...London, Ontario...I'm here in Oakville, but was actually born in London...
Wishing you all the best in your recovery
Lisa
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Lyme, Babesia, 20 yrs w/neuro-psych-cognitive |125D/72pg|25D25ng(Nov05)Weaned hydrocortisone, Feb08-Feb09|Ph1Feb09/25D5ng|ModPh2Oct10/25D8ng|
Ph2Nov10/125D18pg/125D3ng(Nov10)
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JanEE
Member
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Posted: Thu Sep 4th, 2008 21:52 |
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Welcome to our world John---and Merry Christmas. It's an exciting and interesting journey for sure, and one we're all happy to be on---even though we sometimes question our own sanity when the road gets a little bumpy. But the minute we feel better it's all forgotten, and we're once again on our way. I wish you well.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Adrianne
Member
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Posted: Fri Sep 5th, 2008 03:46 |
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JanEE wrote:
" It's an exciting and interesting journey for sure, and one we're all happy to be on---even though we sometimes question our own sanity when the road gets a little bumpy. But the minute we feel better it's all forgotten, and we're once again on our way."
Jan, this is so true and you put it so well! Good refrigerator material, for sure.
John, welcome to the MP family! It's good that we can all support one another "when the road gets a little bumpy"
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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JohnMcC
registered
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Posted: Sat Sep 20th, 2008 00:15 |
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I now have my phase one meds in my grubby paws - MP-Day has been selected and now I wait for the fun to begin.
 let the bug killing begin!
Regards
John
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Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JanEE
Member
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Posted: Sat Sep 20th, 2008 02:35 |
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John,
Yes indeed!!!
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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expate
Member
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Posted: Sat Sep 20th, 2008 05:55 |
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Oh yeah! Keep us up to date.
Good for you.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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JohnMcC
registered
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Posted: Thu Sep 25th, 2008 19:42 |
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I just got my latest D-tests -
25 D = 30
1,25D = 63
ACE = 35
CRP 28
Theses are better than the last ones - so I've made some progress in getting the values into striking range for my impending jump into the deep end.
Any thoughts about the values would be appreciated.
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JanEE
Member
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Posted: Fri Sep 26th, 2008 02:32 |
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| That's great John. You've just barely started and already making good headway. Keep up the good work. ---Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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JohnMcC
registered
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Posted: Mon Sep 29th, 2008 03:16 |
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Day 1 is over, dropped 20 points on my BP, dizziness and muscle cramps - a good start. Starting to notice some eye strain so time to get the NOIRs back on
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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expate
Member
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Posted: Mon Sep 29th, 2008 03:35 |
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... and keep them on, sir.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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