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marion villa
Member in Phase 3
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Posted: Mon Aug 11th, 2008 05:07 |
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Hi everyone:
I wanted to post here, to say to all the people starting with the MP how I am right now.
I started the MP in october 07 and the full MP in january, now I am in phase 2 and I can say that I feel quite well. In january I had experience strong IP reaction, almost intolerable, because I was learning how to manage the mino doses, and it was confusing at first, to know how I developed with the dose, some people use extra dosing or more frequent dosing to lower symptoms, but I didn´t work this way, I reacted very strongly and I had to wait more than two days to take the next mino dose, and it was scary, because I had high fever, no apetite and extreme fatigue.
The point I really want to talk about is this: When I was very ill before the MP. I had a terribly active, painful, extreme RA. I got my hands and feet very crooked because no treatment ever worked well, I had poor control over the RA for about 10 years, until I was controled with ciclofosfamide ,prednisone and arava.The price was high because I had flu infections and stomach infections all the time which I couldn´t control without taking abx, and all the time I had fatigue, body pain in all the ranges, hair loss, dry eyes, bumps in the skin and swellness in strange ways, ulcers that didn´t heal, strange rashes, and other weird symptoms that nobody doctors believed I had, but they were true.
I had that treatment about 8 years, until I realized it won´t do me good anymore, and I knew about th e MP, benicar wasn´t available in mexico then, so I waited, and read and study.
Then I had benicar here an inmediately I started the MP, miraculously the prednisone weaning process was EASY, almost comfortable, I could never before could wean from it, no matter how hard I tried, God knows how....
then I passed the ph1 tough things I first told you, then all was in it´s place I learned how to do it, and how I did react, moved succesfully through phase 1 to phase 2... and the most astonishing thing is: I WAS TOTALLY BEDRIDDEN BECAUSE RA IN THE PAST, AND SINCE MP, MY COMPLAINTS ARE STOMACH CRAMPS AND SLEEPINESS !!!!!! NO RHEUMATIC JOINT PAIN AT ALL. I AM NOT AN ARTHRITIC WOMAN NO MORE
THANKS DR. MARSHALL, MEG BARB ALL
I feel bad, sometimes, but comparing with the illness itself, this is a piece of cake my friends... and I am heading for a completely healthy life.
So don´t give up, study and hang there, and we soon will give a party, and dance all night ok?
Marion
Last edited on Mon Aug 11th, 2008 05:12 by marion villa
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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salam
Member in Phase 3
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Posted: Mon Aug 11th, 2008 21:11 |
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| Happy for you. Very convincing post. Wish you the best.
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Diagnosed with Early RA in March 2007. benicar Sep.07; ph1 Oct.07. Ph2 Dec.07. ph 3 Sep. 08.D-25 2.8 Nov 07;7.5 April,08.Less than 7.0 June 08; 9.5 Aug 08 (all in ng/ml).
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Marber144
Member in Phase 2
| Joined: | Wed Mar 5th, 2008 |
| Location: | Connecticut USA |
| Posts: | 90 |
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Posted: Wed Aug 13th, 2008 23:30 |
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Hi Marion, Your progress is so encouraging!
Partying & dancing all night! A goal for me also to think of - having that much fun!! It sounds like you were pretty far down the road with RA. And, not being arthritic anymore must be wonderful. You are very encouraging to me.
Your happiness & gratitude are present in your words.... Thanks for sharing! ~ Martha
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Lyme Bart Babs Erlich Dx'00| DDD&HashimotoDx'01| OA Dx'90| HTN Dx'99|FM Dx'03|ApneaDx'06| Levoxyl Mucinex| 25D:Mar08(Jul08)[Oct08].Jan&Apr09.= 14(20)[11].9. ~125D:60 ~~~Beni:Jun29/08 Ph1:Jul20/08 Ph2:Aug28/08~~~
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marion villa
Member in Phase 3
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Posted: Wed Aug 13th, 2008 23:45 |
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martha: far down and for so long!!Let´s say I am in the middle of the voyage, I can see the other side from here!!! thanks for reading.
salam:
I hope you continue succesfully too to your ph 3.
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 79 |
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Posted: Thu Aug 14th, 2008 06:33 |
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Marion,
So amazing to see your post! Bless you for enduring all that you have for 10 years!! And so very exciting that your arthritis is under control!!! Wow!!!
Lead the way! I'm right behind you!
Michele
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RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
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marion villa
Member in Phase 3
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Posted: Fri Sep 12th, 2008 07:19 |
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hi guys:
Phase 2, benicar 40mgQ6 hrs.
Non Mp meds, paracetamol 500mg Q8hrs, advil 200mg Q24 hrs, voltaren 100mgQ24hs.
commentsToday is the las day of this cycle.I´m not having very noticeable IPR wiith 100mg of mino, I am slightly tired(4), mostly because I had my period this week, so the feeling is more related to hormones than to IPR, I had insomnia (4),headache(3), flulike state(3), but I feel ok.(!). I notice a change in my skin : i´m dry and flaky a lot(8), itchy and shedding everywhere. I have a lot of new moles eventhough I´m out of the sun almost completely, so now I am pure white with spots!
sun exposure
yesterday I went in a long car drive for the first time since I began the protocol last october, i was well covered zinc, noirs etc,in the sunlight almost 3 hours and I am not feeling ill today, nor my eyes hurt. So today I am less sensitive to sunlight, this is great news, I also have to tell you,no more GI IPR: no serious stomach cramps, no diarreah ,no ulcers in the skin, almost no bodypain. If I had not so noticeable tiredness I could tell that I felt these days like a normal person.
thanks
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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marion villa
Member in Phase 3
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Posted: Wed May 6th, 2009 22:07 |
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I can tell you about myself: I have been ill since I was about 21, i started feeling so bad and sore that I was in bed about 14 years, I only stood to go to pee and bath...I did all treatments doctors reccomend: nsaids, all of them, metothrexate, predni ridaura, penicilamina,plaquenil, homeopathy,fisical therapy, psicotherapy, hypnosis, acupuncture,witchery, naturism diferent diets, juices oil fish, even quemotherapy for cancer, this last one had a little effect on me, but it went too long time and my hands and feet spoiled, I had surgery there, and it was a big hell, added to previous pain and dispair,and suffering..
The idea was to be controlled, the life I had left( not much)and had a happy attitude because that was what god sent to me...
all was lost, you know what I mean? :" there is no cure, and you will get worse for sure and die".these ilnessess as yours and mine only go WORSE in time, never better. No one gets a spontaneous cure with all I mentioned above.
then I knew about MP. which is very well explained, it is clear, scientific an reliable.I will feel bad but in some amount of time, maybe 3 or 4 years (maybe you think is too much¿?) I will be:
1st: ALIVE
2nd: HEALTHY
I´d rather spend my next years healing myself for sure with the MP, slowly, I know.. than suffering a slow, painful and unavoidable expensive death.
I am In no hurry at all.
I am not selling anything , this is how the thing was to me.
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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marion villa
Member in Phase 3
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Posted: Thu Sep 17th, 2009 00:19 |
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hello guys:
I like to write in this thread when I am feeling ok. So I tell you how is it going.
All 2009 has been phase 3 stuggle to rise the doses,with a lot of IPR and feeling bad. A lot of effort and a little rising in the dose.
So much IPR,I was tired. so I decided to have an abx break, gain some weight, rest a little and give my family a little quality time with them.
Now I have 15 days on only Benicar Q6 hrs, and I am feelig ok, little IPR mostly fatigue, but no more than that,
I am weak because all the bedbound life from last 2 years, but I intend to get more movement and gain force during this break.
Not much sun sensitivity though. I cover myself but not so carefully as before, and I feel great.
Good news huh!
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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SanDiegoJoy
Member in Phase 3
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Posted: Sun Sep 20th, 2009 21:50 |
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Marion: Very nice to hear that you are feeling a little better on your break and I hope you manage to gain some weight. I read your earlier post from August about how much better you are with your RA after 2 years on the MP. Your story is amazing. My girlfriend whose sister-in-law has severe RA wants me to e-mail your amazing success story to her so maybe her relative will try the MP. It's wonderful you are doing so much better now after those diifficult years. That's great.
Joy (SanDiegoJoy)
Last edited on Mon Sep 21st, 2009 00:03 by SanDiegoJoy
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Joint/skin Sarcoidosis Osteoporosis| short-term memory loss| NOIRs| PhI 12/05| PhII 4/06| PhIII 12/06| D <7 5/09 D <4| Levothyroxine 75mcg/d; Bi-Est 5mg/Prog 10%gel/d; Klonopin 1 mg. & Tramadol 50mg HS; Voltaren gel prn joint pain
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marion villa
Member in Phase 3
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Posted: Mon Sep 21st, 2009 01:59 |
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sandiegojoy:
it is a long race indeed! but the results are for sure,
feel free to tell your relative to talk yo me.
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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SanDiegoJoy
Member in Phase 3
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Posted: Tue Sep 22nd, 2009 18:20 |
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Hi Marion. It's my friend's relative. I'll e-mail my friend your success story post and your offer for her relative to contact you and I'll give them your yahoo and hotmail e-mails so the relative can e-mail you for your phone number if she wants to call you. Thank you!
I have a question for you. You said in the August post that you now don't have any rheumatic joint pain at all and are not arthritic any more. Are your hands and feet still crooked? Did that improve somewhat? Did you have any bony growths (growing out on the sides of the joints), and if you did, did they improve or go away at all. I have bony growths from Osteoarthritis from Sarcoidosis and have rather large ones on my elbows that are painful and smaller ones elsewhere on various body joints. I was wondering if they will improve. They have been very slowly getting more noticeable but I have a couple more years to go on the MP.
Last edited on Tue Sep 22nd, 2009 18:49 by SanDiegoJoy
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Joint/skin Sarcoidosis Osteoporosis| short-term memory loss| NOIRs| PhI 12/05| PhII 4/06| PhIII 12/06| D <7 5/09 D <4| Levothyroxine 75mcg/d; Bi-Est 5mg/Prog 10%gel/d; Klonopin 1 mg. & Tramadol 50mg HS; Voltaren gel prn joint pain
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marion villa
Member in Phase 3
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Posted: Tue Sep 22nd, 2009 19:04 |
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san diego:
My hands are very crooked, I had surgery on the righ one about 8 years ago, but it went worse! so I didnt go for the left. Now the left isnt worse, so far. My feet were also crooked but surgery helped a lot. I had bone bumps in my knees and elbows but right now they are ok, the pain is not constant as it was, only when I am going to have my period or if it is humid and cold and I dont cover well,but it gets pretty allright with paracetamol, which never in the past worked at all. So I am better, if I werent so weak, because of the bed bound and all this inactivity I could walk and even dance ok,I hope my endurance gets better in this abx break and my body muscle strenght also improves . I dont want to name myself as an arthritic because we all have Th1, whatever symptoms we have developed in the previous years.
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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SanDiegoJoy
Member in Phase 3
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Posted: Tue Sep 22nd, 2009 19:31 |
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| Marion: Thanks for the info. Good luck getting your strength back. I'm close to 4 years on the MP, no longer sun sensitive, and feel quite a bit better, so last 6 months started walks and 3 mile hikes (on trails and the beach) which makes my joints hurt more for about a day or so but after regular 2-3x week hikes the pain goes away and my body gets used to it. It feels great to get out in nature and get some exercise. Good luck to you - I hope you are dancing again before too long!
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Joint/skin Sarcoidosis Osteoporosis| short-term memory loss| NOIRs| PhI 12/05| PhII 4/06| PhIII 12/06| D <7 5/09 D <4| Levothyroxine 75mcg/d; Bi-Est 5mg/Prog 10%gel/d; Klonopin 1 mg. & Tramadol 50mg HS; Voltaren gel prn joint pain
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