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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3873 |
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Posted: Wed Jan 31st, 2007 14:51 |
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Your posts are so good to read! Improvement is great too, and that is always the right direction we all want to go. But I also appreciate your objectivity -- weighted fairness to issues. --Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Aunt Diana
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Posted: Wed Jan 31st, 2007 15:20 |
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That's wonderful news, Carol.
It's so great to know your headed in the right direction.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Ival
Advocate
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Posted: Thu Feb 1st, 2007 00:29 |
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Carol
Your bone density test sure sounds good enough to go kayaking.
Ival
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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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carol
Advocate
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Posted: Fri Feb 2nd, 2007 01:03 |
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Thanks friends. And thanks Janet for noticing the tone of my posts. I am a Lover of Truth.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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carol
Advocate
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Posted: Fri Mar 2nd, 2007 02:45 |
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Dear Friends:
I have been on the MP for two and a half years now and on Phase 3 for a full year. I am not yet to the maximum dose levels on the three primary antibiotics, but I am close.
The last few weeks have been a real turning point for me so I wanted to share some news of this in the alumni forum.
My husband and I have been “full time Rv-ers” for almost the entire time I have been on the MP. Some things about the RV lifestyle are very compatible with the MP. Our motor home came with black-out curtains as standard equipment  . Often I am in places where I don’t know people so I haven’t worried about others’ expectations and keeping up appearances when I don’t feel well. Best of all, the scenery changes regularly and this creates the illusion that one is actually living life when in reality you are laying around sick as a dog. Sick as a dog…that pretty much sums up my first two years on the MP.
BUT, as we all know, the MP is not about feeling good. It is about getting well.
Our travel schedule has not been very ambitious. We have tended to travel to certain destinations and stay put for weeks or months at a time because the actual days we spend on the road have been hard for me. This is why it was significant when we recently decided to undertake a rather ambitious two week trip: 1500 miles with four destinations. That I wanted to do this at all is a clear indication that I am feeling much better. I was really pleased with how much I was able to do and how much fun we had.
The first day back “home” was a full schedule as well: a two hour “airport run” for a friend, rushing back to meet mom and sister for lunch, a few errands in the afternoon and an evening out at a local tavern to hear some live music. I just couldn’t believe it was me doing all this  ! I took some vicodin to get through it all, but these days I am biting them in half instead of taking whole tablets.
If you ask me if I have faith in the MP I'll have to say no. You see, faith is belief in something for which there is no proof.
Carol
After two and a half years on the MP, I am ready to retire my NoIRs  . My sunlight sensitivity receded some months ago. I still protect my eyes when I am outside, but the Bolle 100's are what I use these days.
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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DianeC
Member in Phase 3
| Joined: | Sat Aug 20th, 2005 |
| Location: | New York, USA |
| Posts: | 619 |
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Posted: Fri Mar 2nd, 2007 05:52 |
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Congratulations Carol! You are truly an inspiration to the rest of us. You have hung in there and persevered and now you are reaping the rewards!
Best wishes for continued success!
DianeC
Last edited on Fri Mar 2nd, 2007 05:53 by DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Fri Mar 2nd, 2007 15:51 |
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Wow Carol!
I had to chuckle about biting a pain pill in half. I used to think of that as a test to whether I was in pain enough--if I felt like I could chew them. You actually did it (wink).
It was wonderful to hear you were able to do so much in such a short period of time recently. I always thought it would be fun to RV, it must certainly be more fun as you continue to get well.
Always good to read your posts!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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BARNEY
Member in Phase 3
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Posted: Fri Mar 2nd, 2007 21:28 |
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FANTASTIC CAROL!!!!!!!!!!!
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 631 |
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Posted: Sat Mar 3rd, 2007 22:23 |
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Congratulations, Carol, on your fabulous strides!
Your encouraging reports are very inspiring for all of us! May you and your husband look forward to more of those wonderful days ahead! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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Christina
Member in Phase 3
| Joined: | Wed Dec 7th, 2005 |
| Location: | St. Louis, MO, USA |
| Posts: | 214 |
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Posted: Sun Mar 4th, 2007 20:40 |
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I am sooooooo happy for you! I don't know who is more excited about your progress, you or me!  The way I see it is if you feel better and better that can only mean I will too. You deserve it for being so courageous with untested RA/MP waters and for hanging in there when you didn't "feel" better. I look forward to your posts because now most of them are reporting sure progress.
I love it!
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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carol
Advocate
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Posted: Sun Mar 18th, 2007 17:43 |
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Dear Friends:
I continue to feel markedly better. I am at the full dose of Phase 3 antibiotics. Immunopathology is significant but predictable and manageable.
I cautiously started to take supplemental calcium (without D) about 2 months ago. I noticed that it was just a couple of weeks after I added the calcium that I started to feel better. I don't know if there is any connection between these two events. Certainly after a year in Phase 3, one would expect to start seeing light at the end of the tunnel. Still, I felt it was important to report this.
I was motivated to add the calcium after hearing Joyce Waterhouse’s talk at The Los Angeles conference in which she mentioned the importance of getting adequate calcium to avoid secondary hyperparathyroidism. Early in the MP, one's 1,25D may be elevated from the inflammation, but later, the role of kidney production of 1,25D to compensate for low calcium intake can become quite significant and is not desirable for immune function, bone loss and symptoms of excess 1,25D.
I had a serum calcium test done with my last set of blood work (Nov 06, before I started the supplementation). The result was 9.5mg/dl (with a reference range of 8.5-10.4). My understanding is that serum calcium level does not necessarily reflect a deficient calcium intake, since the body responds to lower calcium intake by increasing PTH to increase 1,25D, which then takes calcium from the bone to then get the serum calcium to stay normal.
Since I have been on the MP for well over two years, I felt confident that I did not have to be concerned about hypercalcemia, which can occur when 1,25D is elevated due to severe inflammation.
CarolLast edited on Sun Mar 18th, 2007 18:00 by carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Tue Mar 20th, 2007 15:08 |
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Hi Carol,
GREAT to read your thread! I'm so happy you too have found that taking calcium seemed to help. For me, I began supplementing because I DID develop hyperparathyroidism and the added calcium has decreased my PTH back into the normal range. I ramped the calcium up to 800 mg/day which is where my body apparently wanted/needed it to be, according to my lab tests. I had normal blood calcium all the while, which you noted too.
Just as soon as I began the calcium is when my psoriasis began to improve and my 1,25D dropped as well. So, for me, my evidence was my skin began to "feel better."
Isn't it wonderful to be able to watch our fellow MPers get better? On the flip side of that, I've been losing "friends" left and right due to their illnesses. They may not all be dying (although I did lose one to death) but their minds are so hostile and stressed that they can't maintain a friendship. IMO, it's really sad to watch how many folks are getting sicker and sicker when there's a real cure right under their noses!
THANKS for sharing!
PS - If you ever decide to RV in Phoenix, please let me know in advance. I'd love to see you again!
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carol
Advocate
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Posted: Fri Apr 6th, 2007 01:09 |
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Just some miscellaneous notes on my MP Journey.......
Since starting the MP I’ve relied on my husband to set the alarm and wake me at 6:00am to take my Benicar (which I put in a little pill box on my side of the bed the night before). Lately, when he gives me that “wake up nudge”, I look in the box and the Benicar is gone. I have no idea when I am actually taking it . Perhaps I am finally “trained” and am taking it spontaneously at 5:59a. Or maybe I’m taking it in the middle of the night. Not good for maintaining the Benicar Blockade. So now I’m putting the pill box on HIS side of the bed and he is handing me the Benicar when the alarm goes off.
On low IP days I’m enjoying walking and definitely noticing that I have increased range of motion in my ankles….walking heel-to-toe feels so good! I still have to be careful not to overdo with the exercise, though. Last week I did a 1.5 mile walk on a nature trail and, while it felt great while I was doing it, I suffered with leg cramps big time that night.
I drink a lot of bottled water, both sparkling and still. I know from personal experience that there is considerable variability in the difficulty associated with removing the screw caps on different brands. The easiest is San Pelligrino, followed by Poland Springs. Aquafina and Perrier are two mid-range in difficulty. The hardest is Dasani. I can regularly open the mid-range now. I even cranked off a Dasani a few days ago (yeah!), but can’t do that regularly—YET. This tells me my hands are getting stronger.
..........Carol
Last edited on Fri Apr 6th, 2007 01:13 by carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Christina
Member in Phase 3
| Joined: | Wed Dec 7th, 2005 |
| Location: | St. Louis, MO, USA |
| Posts: | 214 |
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Posted: Sat Apr 7th, 2007 19:53 |
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Wow, Carol, although some may not realize this (like removing little bottle caps, and I totally understand the heel-to-toe comment) these are WONDERFUL accomplishments. I haven't been able to open a small cap like a water bottle in a long time. I'll be glad when I can say this too.
Keep reporting these new accomplishements. I feel like it's a small peek into my future!
Christina
Last edited on Sat Apr 7th, 2007 19:56 by Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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jcwat101
Research Professional
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Posted: Sun Apr 29th, 2007 22:28 |
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I just thought I would add some links that relate to what Carol and Reenie were saying above about calcium and the importance of getting near the RDA (from foods, when possible, and supplements without vitamin D when necessary).
They include information on food sources and supplements.
Don't I need to take a calcium supplement to prevent osteoporosis...
***Should I be concerned about osteoporosis
This one for the LAX conference presentation (has information on secondary hyperparathyroidism):
http://autoimmunityresearch.org/transcripts/waterhouse_lax2006.pdf
and this one for the book chapter:
http://winmlm.neostrada.pl/vitamindbook/vitamindnewresearch.pdf
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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carol
Advocate
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Posted: Wed Jun 13th, 2007 00:41 |
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Phase 3 Continues
I had a wonderful reunion with some dear women friends this past weekend. Two of these women whom I had seen last year commented on the apparent improvement in my physical condition . I used frequent mino (100mg twice a day) to make the most of this time. Talking and listening, laughing and crying…that takes a lot of energy! I stopped the frequent mino Sunday night and I could feel a difference right away. Much more joint pain.
The frequent mino really makes me feel better. When I first tried this strategy in the early days of phase 2, I noticed a benefit, but it was not very significant. I believe the frequent mino was delivering the same anti-inflammatory effect, but back then this just took me from Really Bad joint pain to merely Bad joint pain. Now that my bacterial load is much less, and my baseline pain is less, the same degree of anti-inflammatory effect takes me to a place where I can function much better and do much more.
I can’t believe how busy my schedule has been these past two months. It hasn’t always been easy, and it certainly has not been without pain, but there is no question that I could not have kept up this pace a year ago. I just could not have done it.
A fellow MPer asks me regularly “Do you feel better now than when you started the MP?” (You know who you are! ) I have always found that a hard question to answer. I felt dramatically worse as soon as I started the MP and what my symptoms were like prior to that time seemed lost forever once I boarded the MP roller coaster.
But today I was thinking about a trip I took to Alaska in early spring 2004, about 6 months before I started the MP. It was a wonderful but physically challenging trip. (We were there for the start of the Iditarod. My daughter was a handler for the musher who ended up winning the race that year.) I can recall the things I did and how I felt during and after that trip. There is no question that I am in better condition now.
Moving forward, slowly but surely,
Carol
Last edited on Wed Jun 13th, 2007 00:43 by carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Christina
Member in Phase 3
| Joined: | Wed Dec 7th, 2005 |
| Location: | St. Louis, MO, USA |
| Posts: | 214 |
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Posted: Wed Jun 13th, 2007 23:18 |
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Oh what a great post. Yes, I do know who I am! I'm sure I will keep asking you until one day you say, oh I feel SO much better than I did before MP. It appears that you are definitely heading in that direction. I know, it's toooooo slow, but it is better than getting worse which happens on all the other drugs.
I do so much appreciate my ability to do so much more than I could when I started the MP. I feel I am slightly better than I was when I was taking 200mg Mino daily, on the regular AP. I can actually get the kids dressed and off to the bus at 7:30am WITHOUT any pain meds. That is a true accomplishment. I hurts like hell still but it would have been totally out of the question a few months ago. I too feel I am heading in that healthy direction. HOORAY!
Congrats on your success. I will keep watching.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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sunflower
Member in Phase 3
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Posted: Thu Jun 14th, 2007 15:53 |
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carol wrote:
A fellow MPer asks me regularly “Do you feel better now than when you started the MP?” (You know who you are! ) I have always found that a hard question to answer. I felt dramatically worse as soon as I started the MP and what my symptoms were like prior to that time seemed lost forever once I boarded the MP roller coaster.
hi carol,
i can so relate to this statement.....my family and friends often ask me this same question and i usually don't have a definitive answer for them, because as you so aptly state, it's sometimes hard to really remember exactly how one felt before the MP. i just know i had become so miserable on a daily basis, that i was desperate for someone who understood what was wrong with me and how to cure the problem....not just dampen the symptoms for awhile.
thank God for dr marshall and the MP!!!!!!!!!!!! even though, as you say, this treatment can surely be a wild and unpredictable ride and takes alot of patience and persistance.....we truly are on the road to a real cure.....hallelujah!
i love your posts, carol, and am so encouraged by your progress.....keep goin' gal.......sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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carol
Advocate
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Posted: Fri Jun 29th, 2007 04:54 |
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Here’s what I’ve learned about measuring my progress on the MP…..
A few months after I began the MP (Aug 2004), my husband and I started living and traveling full time in our RV. We have two destinations where we’ve spent several months each year. Now that I’m approaching my 3rd anniversary on the MP, I can look back and compare my condition one year to the next when I have been in these places and see the progress I have made.
We are campground hosts at Bryce Canyon Nat’l Park for three months each season.
April-July 2005: When we arrived at the park I was well into my first year on the MP but my IP symptoms were still very intense. My husband performed all the volunteer duties and I went for days without leaving the RV. I worn my NoIRs all the time. The slightest hint of campfire smoke irritated my eyes. Shopping of any consequence requires a 2 hour drive to Cedar City--it was a real ordeal for me, even with my husband doing the driving, loading the car, etc.
July-October 2006: I was extremely depressed when we returned to Bryce, partly due to IP, but also in response to the realization that I was still much too sick to hike. But as the season wore on, things picked up. My eyes were much less problematic. I “patrolled” the campground in the host golf cart. Throughout the season I went to almost all of the Park programs: geology of the canyon, native plants, astronomy, outdoor photography, etc. The previous year I didn’t feel well enough to go to any of these. On really good days I went to Cedar City by myself. I’d have lunch, make several shopping stops, get my nails done, plus manage the driving. I marked my second anniversary on the MP at the end of our stay.
July-October 2007: As I write this we are on our way back to Bryce Canyon. I’m thinking about the beautiful Rim Trail. It’s paved and level and very accessible. You can walk a few hundred yards or a mile or so. It’s not exactly hiking, but it‘s a start and I believe I can do it.
I see the same trend when I think about the spot where we “winter over” on the Gulf Coast.
Nov 2005-Mar 2006: I was into my second year on the MP. My husband played golf almost every day. He took our “toad” (the car we tow behind the RV) to the golf course. No problem. My world was still mostly the inside of my RV, just as it had been my first season at Bryce.
Nov 2006-Mar 2007: Hubby played golf daily as he had the year before, but most days I dropped him off at the golf course. Seems I always needed the car for something or other .
Winter 2007-2008: Planning ahead, I’ve already told Phil I’d like to spend less time “docked” there and more time exploring the southeast US.
I’ve been on the MP for a long time. I still have considerable pain and limitations due to RA. Day-to-day, it’s easy to focus on how sick I am and easy to forget how really sick I was. Looking at these year-to-year comparisons helps me see the forest for the trees.
I’m still responding dramatically to Phase 3 antibiotics. (“Responding dramatically” means lots of herxing to various combinations) This gives me hope that the MP can take me all the way to remission or cure. I don’t know how long this will take. We’ll see.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Martha
Member in Phase 2
| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
| Posts: | 182 |
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Posted: Fri Jun 29th, 2007 14:15 |
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Carol,
I'm glad you're seeing some really great improvement. I started MP the first time about 1 year behind you and after 6 months on AP became pregnant. Anyway, I follow your messages as your have rheumatic disease as well and did AP before MP just as I did.
I love Bryce Canyon-it's one of my favorite parks here in Utah. I live in St. George so if you're in the area, give me a call. Snow Canyon and Tuachan are here and worth a visit-if you can stand the heat!!! I'm not a native Utahn, but been here 13 years so far-so much to do and see. I'm looking forward to being where you are now with your increasingly better health.
Congratulations,
Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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