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carol
Moderator
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Posted: Fri Jun 2nd, 2006 15:29 |
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AmyEliz wrote: No one has yet to respond on the length of time in comparison to the starting of MP (see earlier post). I think it is a good study to look into.
Amy:
I think it is a good hypothesis that people who have been overtly sick for a shorter period of time should respond more quickly/easily to the MP, but I'm sure no one knows for sure if this is the case.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 384 |
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Posted: Sun Jun 4th, 2006 03:24 |
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Amy,
I'm going to put my 2 cents in on your question...and that's about all its worth. From a lot of anecdotal evidence from people on ph 2 in their posts, etc. I'd guess that the length of time may be a factor in how fast one recovers but I'd say more important are 1) how much bacterial load one has, 2) where the bacteria load is and 3) how much "supplementing" one was doing with Vit D prior to starting the MP. There are probably more factors that Trevor would point out but really, none of the above matters once you're on the MP. It's going to take the length of time it takes, whether that is 2 years or 4...it'll be worth it to get your health back.
Now, why do I think the above?
Points 1 and 2...where and how much bacteria load: I've heard of many folks who have CFS or Sarc in neuro system or in heart and those folks HAVE to be a bit more careful with their meds as far as rate/pace goes (one can't afford a heart attack as a herx and neuro herxing is just something you have to moderate). Also, folks who have much more bacteria (typically those much sicker than others) have to start slower as they have many more bugs to kill and herxing is directly related to the amt of bugs one is killing. Now one would think that the "length of time" dx'ed with a TH1 disease signifies the bacteria load...and there is probably some correlation but it wouldn't be enough data to pass any statistics rule book .... As it turns out I was dxed in 2003 but in looking back...I had this disease since my 20s (25+ years)... so, whose to say how long someone really has had the disease...can't really tell by when someone was dx'ed.
Point 3 = supplementing with vitamin D. I suspect it would have been another 5+ years before I'd of had a significant enough problem to be dx'ed except...I started a get health regime 8 months before i was dx'ed...and part of that was supplementing with fish oil, flax seed oil and other good omega 3 items (that contain massive amts of vitamin D). I also switched to eating a tuna salad about 4 days a week for lunch. My lymph nodes started growing and I paid them no never mind until they were large enough I couldn't swallow well....and I had such bone loss in my jaw/teeth that I lost great amounts of gum line (roots of lower teeth show quite a bit now)...after C-scans, biopsies of bone marrow, gums and lymph nodes...it was found I had sarc in quite a few places. And all along I just thought i was getting old (all the other SXs except for the lymph nodes).
Now the key point is that if someone's vitamin D levels are very high...its going to take quite a bit of time to get that down low enough to a level that the immune system works at an optimal level for the MP. I've seen several people take a year or more to get their Vit D level to that point. And really, I'm going to guess that the MP becomes a bit more deterministic at that point (length of time might be easier to determine...as until then, you're really not healing at an optimal level).
So, I know you're wanting some statement that if you just got dx'ed, you're likely to get well quicker. That may be the case, but it probably depends more on the items I mentioned above.
I hope you're one of the lucky ones and can get well in record time. I've seen a couple posts from way back about folks who felt healed in a year or less so I know it is possible...
Good luck,
Robert
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Morris W. Milnes
Member
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Posted: Sun Jun 4th, 2006 05:11 |
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I might add another 2 cents to Robertr's observation that it may take longer also depending on how long your immune system was supressed by prednisone. I spent about 15 years on fairly low doses of prednisone and unfortunately I seem to be in for a long hard haul. Now that my immune system is capable of running, it seems to like to .
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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AmyEliz
Member in Phase 3
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Posted: Sun Jun 4th, 2006 18:54 |
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Benicar 40mg Q6H; Mino 75mg QOD
Morris and Robert,
Thank you for your posts. I had one of your symptoms (Robert) mentioned dating back many years ago (i.e.: gums receding but yet very health teeth) I too thought it was age.
One year prior to my dx, I visited a holistic doctor that “cured” me from chronic neck pain after 5 years, all due to an auto accident. I was put on a vegetarian diet. I took more supplements than actual food. Fish oils, Omega 3’s, Salmon 3 x 4 days a week. I really was never into the flour and sugar foods and eggs/milk was not my thing. I exercised when I felt good enough to do so. When I was dx one year late with RA, I realized the connection; I put it all in fast forward!
Once dx with RA, my Rheumatologist suggested Prednisone. I agreed with great hesitation and told her only for two weeks, NO LONGER. Since then, two different (pill) medications and once a week of 50mg Enbrel, lasting for a year.
Who is to say what combination of Time, History, Medications, Consumption, Life-style, and DNA has to do with the road to recovery. I really think that once MP is acknowledged as cure for many out there suffering with multiple diseases, we can answer even more about the “hows”. For now we can only communicate what we all experience and find even more connections to some of the many unanswered questions; “how long, what to expect, why are the differences from you and me so different”.
6/2/06 Benicar Q6H; 75 mg Mino QOD - took Mino 6/1/06
Friday, 2/06 I experienced my first herx in addition to my heart herx. I could not go to work, I felt like a train hit me. I felt joint pains moving around from joint to joint, fatigue, fever & chills, nausea, strong lower back pains, tingling in the lower legs and dizziness.
I felt the worse I have felt since on MP. Sat 3/06 was a much better day.
Thank you
Amy
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Sun Jun 4th, 2006 22:08 |
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Correction on Mino:
Benicar 40mg Q6H; Mino 75mg QOD
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Mon Jun 26th, 2006 12:30 |
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Benicar 40mg Q6H, Mino 100mg QOD
Since starting 100mg Mino 2 ½ weeks ago, I have only had one strong, long lasting (24H) joint pain. The pain was what I felt in my joints before starting MP. Dizziness and blacking out has been a daily event but my brain fog has eased up for now.
I plan to start Phase Two this Saturday, three days after my outpatient surgery.
Where do I post in order to get my to Phase Two?
AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Jun 26th, 2006 17:28 |
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Amy
see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information, after which, we encourage Members to begin a new progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing in preparation for Dr visit. Thank you.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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AmyEliz
Member in Phase 3
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Posted: Sat Jul 1st, 2006 22:15 |
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Benicar 40mg Q6H ; 100mg Mino QOD
I made it through outpatient surgery without any major issues. It is now three days and besides forgetting my Benicar last night (3 ½ hours late) and waking up this morning with very glasses eyes and my face swollen, I am doing OK. I was feeling major joint pain in my R shoulder before taking my missed Benicar. By the way, I took 20mg at 9:55pm (normal dose is at six) and another 20mg at 10:30pm and then again 40mg at midnight. I am not sure that was a good idea but I feel fine today except for the swelling from surgery. I want to start Phase two in a couple days. Herx’s have been very mild and I have not had any heart herx in a couple weeks.
AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sat Jul 1st, 2006 22:20 |
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Thanks AmyEliz
is good you are thru your surgery ok.
as per the FAQ you have managed well. What times should I take my Benicar? What if I forget a dose?
Having had cardiac herx in Phase One, we recommend discussing the Modified Phase Two with your Dr.
Have you sent for your Phase 2 Questionnaire so that you may have access to the Phase 2 forum and Information to discuss your medications dosing etc before starting..
re 25D=33: You may wish to discuss with Dr re having your 25D retested also.
see How often should I test D levels? What are the target numbers?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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AmyEliz
Member in Phase 3
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Posted: Wed Jul 5th, 2006 22:15 |
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Hi...
I waiting for my Phase two & three to be added to my board.
The questionaire went in last week.
See all of you on the flip side...whenever that may be.
AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Fri Nov 14th, 2008 08:04 |
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40mg Benicar Q6H & Q4H; Phase 2 med, 100mg Mino
Loratab 1/2 & whole tab as needed; Zanax 2 (broken in half) times this week for pain;
Doing well!
Light sensitivity: Doing great on that, a definite noticeable "better" feeling when I turn Florissant lights from above but sun does not bother me as much as years ago.
Sleeping habits: I sleep nights now. My R shoulder no longer keeps me up. The wrist has not been an issue for almost a year.
Noticeable: Right shoulder is recovering after 1 1/2 years!! I can now lift my arm above my head. Thank God to Campbell’s soup can...that's what I used to get my strength back. Amazing how I use to lift 120lbs / sets of 8; above my head, and now I start with a”soup can" to regain strength. I will get back there.  I rarely have problems with the knees, toes, feet and wrists. However, the left shoulder is starting to hurt (at least a couple months) but I really believe I will not experience the same as I did with the right shoulder. My neck flares up ever so often (past car accident) but manageable. My left elbow is just as bad as I had past posted. Painful but much like my shoulder symptoms. Dealing with it. It will come back.
Great Things: Went to the gym on a 'free-pass' for the first time being diagnosis with RA. Walked/ ran for 30 minutes. Felt great that day but killed me the next day; all the same it was nice to be in a gym. Still not really to return; mornings are too hard on me. Muscles still do not move and joints do not bend. I hope someday I will spring out of bed one day and ride my bicycle with in 10 minutes from being up
(awake...like I use to).
Weird Things: As I wash my face in am / pm I can feel small bumps on my face but to look at my face I can not see it. My toe nails look to have a fungus, nails peeling away at the cuticle. Never had I had this. Bumps under the skin in all different parts of my body (one above my knee, another above my left elbow, base of my neck and now I think that's what was found in my breasts two months ago). I am so far clear of cancer...by the way. 
Overall, been doing great! Pretty tired but that's what weekends are for...right?
Hope all is well with everyone. God Bless! Pray for our nation.
Amy
Plans: Moving up! Herxes are min.
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Thu Jan 1st, 2009 19:46 |
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MP meds: 40mg Benicar Q6H; Phase 2 meds;
Non MP meds: Loratab 1/2 & whole tab as needed; Zanax 2 (broken in half) times this week for pain;
Doing well!
Light sensitivity: Doing great on that, a definite noticeable "better" feeling when I turn Florissant lights from above but sun does not bother me as much as years ago.
Sleeping habits: Sleeping still great. To feel good for the day I must maintain at least 10 hours per night.
Noticeable: THIS IS MY THIRD DAY IN A ROW OF NO PAIN KILLERS!!! It's great! I haven't ever gone this long in years!
I have in the past couple 10 day cycles reduced my med due to long hours at work, menstrual cycles and just due to pure exhaustion. This will be my second round and feeling pretty dang good about it.
Joint pains: My R shoulder that has locked to my side for over a year and a half is now moveable and able to lift above my head with light weight. I have had a few flare ups with my L wrist but only lasting a day or even a couple hours. L shoulder is starting up with the weakness and limited ROM. I do not think the L Shoulder will be as bad as the R. Usual flare ups in feet and hands, not lasting but a day or two. Hip pain seems to only happen when I am on my feet too long or when I lay on my side for too long in bed.
Unusual: Both large toe nails are coming off. It started to look like a fungus of some sort but now they are both white and the nail below the nail that's coming off is not looking very healthy. Very thin, wavy, cloudy white, not sure what this is.
Sinuses are constant and sore throat in the early AM has been a regular for about a year now.
Had a few chest pains after an increase of med but nothing like I use to feel. They are very brief and far and in between. Very mild. That's remarkable considering my past history.
Over all, things are good. Nothing to be alarmed about.
Happy New Year to everyone!
Amy
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Jan 1st, 2009 22:11 |
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Both large toe nails are coming off. It started to look like a fungus of some sort but now they are both white and the nail below the nail that's coming off is not looking very healthy..
Over all, things are good. Nothing to be alarmed about.
It takes a very special kind of person to survive for years with Th1 disease, and then to philosophically absorb as 'unremarkable' events like toenails coming off
A very Happy New Year to you and yours
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AmyEliz
Member in Phase 3
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Posted: Thu Jan 1st, 2009 23:28 |
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Trevor.
Thank you for your reply. Happy New Year to you TOO!
Amy
WE ARE ALL GOING TO MAKE IT BECAUSE OF YOU!!!
THANK YOU!
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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