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wytnez
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| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
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Posted: Thu Jan 25th, 2007 00:48 |
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Hello MP family,
Today is my 2 year anniversary. I went to see my MP Doctor yesterday and the lungs are moving more air. He refilled all my scripts for the next 4 months. I went to see my GYN today also and he also listened to my lungs as a part of my routine visit and taking deep breaths was very easy and no crackling sounds.
Reflections: I am so thankful to be on the MP. 2 years ago I was afraid for my life. I was wheezing like crazy and my CT of the chest showed extensive lymphadenopathy. I was having night sweats and constipation and I couldn't sleep. Exercise was the scariest because I just could not get enough air.
Present: I walked up two flights of stairs to my GYN's office and didn't even notice. Sleeping through the night like a baby since beginning the benicar. Wheezing only when herxing. No night sweats. Bowels are regular. I haven't had a C.T since September and probably won't have another one until next Sept. The last C.T was stable.
When I look back, I know that I am better. When singing, I can hold long notes. When talking I am not wheezing. When walking and talking I don't feel air deprived. I think another year or so and I hope to be in the clean up phase. But you know what, how ever long it takes.
I just want to tell anyone that is just starting out, hang in there. The road may have some bumps in it but things will get smoother with time. If we just stay the course, there is a pot of health at the end of this road. I am confident of that. Trevor is proof, Meg is proof, Belinda is proof and Carole is proof. And there are many others such as Ms. Dale and the list goes on and on.
Thank you so much for your support, Barb, Lottie, Janet, Donna, Hopeful, Aunt Diana, Toni D, Maria, Robert, Morris, Freddy and if I forgot someone, charge it to my head and not my heart. I am just so thankful for all of you. You really make this journey worth while. To see each of you healing is such a miracle.
My MP Doctor thanked me for sending him the DVDs. He hasn't got a chance to watch them but he thinks the MP is fascinating!! I am trying to get him comfortable so that he can start treating other patients. It may be a difficult case but I am on it. I talked to his nurse about it for about 20 minutes and she said that she is going to watch the DVDs because she is very interested in knowing more about chronic diseases. We really had a great visit.
Worked a long hard day and so I am going to relax and get ready to watch American Idol.
Happy MPing.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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LeAnne
Member in Phase 3
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Posted: Wed Jan 31st, 2007 12:25 |
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Hello, Wytnez. Congratulations on making it 2 years on the MP. I have been on the protocol for around 16 months or so, and have seen dramatic improvements. I think it is wonderful to see your progress! To be able to walk up a flight of stairs without having to stop and rest is certainly progress. Is your MP doctor a pulmunologist? It is always great news when doctors are actually interested. I like watching "Idol" myself. It is hard to believe some of those people actually think they can sing. It is pretty entertaining.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Aunt Diana
Moderator
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Posted: Wed Jan 31st, 2007 19:27 |
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What a fabulous post, Wynez. Who could question this protocol after hearing your experiences.
You've got a wonderful attitude about all of it too. Thanks for being there.
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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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Wed Jan 31st, 2007 20:18 |
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... and it does appear to be quite happy!--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, 10/08 25D6.9
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Carole
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| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
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Posted: Sun Feb 4th, 2007 03:57 |
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A very belated, but heartfelt congratulations, Wytnez, on your two-year anniversary! 
Your progress has been quite amazing and very, very encouraging for everyone! Thank you for always sending positive, inspiring messages to others! Take care and best wishes! . . . 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| AC
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Posted: Sun Feb 4th, 2007 09:07 |
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Saj,
Remember the old days, when your breathing sounds scared your co-workers? <sigh> It's nice to see how far you've come, and to know the days of feeling "cloggy" (wasn't that what you called it?) are behind you.
The experiences you've shared continue to help others.
Congratulations on two years,
Belinda
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wytnez
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Posted: Tue Feb 6th, 2007 00:35 |
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Hi Belinda,
Yeah I remember those days. I can tell this much, my breathing is nothing like it was 2yrs ago.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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wytnez
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Posted: Sat Mar 3rd, 2007 22:51 |
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Hey MP family,
I realized I hadn't posted in a while and I just want to give a brief update. I am at the full dose Phase 3. After each cycle I am noticing great improvements. This only comes after the I.P kicks me in the tail from time to time.
Sx: cloggy feeling in chest (minimal) wheezing upon exertion (from time to time)
I think I am going to stay here because I am really seeing great results. And since this is the combination that kicks the 70S ribosome in the tail, I am going the duration. Once I get at least 7-9 months under my belt and I feel like I am not experiencing I.P's, then I will do the switch.
On Thursday I had to clear my airway and my Director said, "Shirley I haven't heard you do that in a long time". I said, "I know, isn't it wonderful?"
This combination is not easy and there are days where I just did not feel good but I have more days than not that I feel great! I took the day off from work yesterday and did some shopping, yard work and house cleaning and was still going strong until I went to bed at 10pm. I slept very well and woke up to take my benicar at 4am and went back to sleep until 7am. I stayed in bed and watched cartoons and dosed back off until about 10am. Feeling good today. I am not going to do much today, just relax.
What I love about the MP is, when I first started, I didn't know if I was herxing or not. Now hindsite tells me that I was and big time. It is wonderful to see the resolution of my symptoms. So there you have it. I feel so good today. Emotionally and physically.
Happy MPing.
 
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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BARNEY
Moderator
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Posted: Sat Mar 3rd, 2007 23:53 |
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CONGRATULATIONS on your accomplishments on MP.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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wytnez
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Posted: Fri Apr 6th, 2007 06:03 |
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Hello MP family,
I haven't posted in about a month so I guess it is time for an update. Where do I start. Things have been going relatively well for me. I have been working out every morning. The cloggy feeling in my chest only happens when I uncover a new nest of bugs.
I had to put my cat down a couple of weeks ago. That was really hard because I had her since she was 6 weeks old. She was 17 years old and not able to get around very well and in pain. It took me about a month to come to terms with the fact that it was time. I didn't want to let go because she was still eating and sometimes seemed more alert then others but my husband reminded me that she could not tell me why she was having the problems that she was having or if she was hurting. We knew something was wrong with her though. So that was very hard but I know now that I did the right thing.
In the mean time, my job duties have increased. My Director has taken over another department interim which increases her duties which increased mine so I have been working from home trying to keep our department afloat.
Health wise I was thinking that I feel almost normal again. I mowed the front yard a couple of days ago and I was smiling because I was mowing like a pro. And no wheezing!!!! Energy has been great! It will be a year in this new house and I remember when we were looking for a home how much my chest felt like cotton was stuck in it and I would be trying to clear my chest all the time. Even when we moved in here, I was having that feeling of fullness in my chest, wheezing was still present but had decreased quite a bit but was not where it is now.
Now, things are so good. Maybe in September, I will get my PFTs checked to see where I am. But going on how I feel now, I know that my PFTs are already improved. Oh I almost forgot, at our employee forum, I did karoke. It was so much fun. I sang smooth operator by Sade and me and a guy that works in our cath lab did a duet of Sonny and Cher " I got you babe ". No wheezing, I did not miss a beat.
I was singing at my desk and my Director heard me holding a note really long and she came out of her office and said,"Shirley, I haven't heard you sound like that in almost three years! You sound great!". I didn't even have to take a deep breath to hold that note either. My voice is sounding so much better. Much like when I used to sing for a living. I went to the recording studio last month to play producer for a jingle. I really wanted to sing in the jingle but I needed to let someone else shine. It was good to know that if I needed to sing that I have my voice back and my lung capacity is returning.
I know that I always post positive things and I want you to know that I am not making any of them up or sugar coating anything. I really am doing great! It just keeps getting better and better. My future is bright. I am singing the praises of the MP.
Happy MPing
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Fri Apr 6th, 2007 08:21 |
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Saj,
It's nice to be able to sing again, isn't it?
Glad things are working out well for you
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LeAnne
Member in Phase 3
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Posted: Fri Apr 6th, 2007 12:42 |
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Hello, Saj. I am sooo happy for you. To those of us who like to sing, it is such a blessing to be able to do it without a struggle. Before I learned of my sarcoidosis, I always had difficulty holding out notes, and I never knew why. I am finally starting to notice a difference in my lung capacity. There was an article in our newspaper about a local who used to sing and travel with a band that would perform at the Imperial Theatre in Augusta and other performing arts theaters. The story was about him having sarcoidosis and can no longer sing. I contacted the journalist, who had the man contact me. I told him about the MP. He told me that he did not know anyone else with sarcoidosis and was pleased to talk with me. I hope he makes use of the information I shared with him. God Bless you as you continue to heal.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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wytnez
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Posted: Fri Apr 6th, 2007 17:21 |
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Thanks Trevor and LeAnne,
I hope that guy keeps in contact with you. If he comes to the website I will be all over him with reasons why he needs to be on this life saving treatment. He will be able to sing again if he gets on the MP. The sooner the better.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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wytnez
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Posted: Tue Jun 26th, 2007 01:12 |
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Hello MP family,
I wanted to give a little update on my progress and how things have been going. I have been having some interesting things happen.
Sx: Some wheezing upon exertion. (haven't had that until yesterday when I ran up 4 flights of stairs, will tell more about that)
Here are a list of things that I noticed over the last month.
- My sense of smell has returned. The smell of the hospital is very strong and smells like latex in some areas. I remember that smell way back in the late eighty's when I worked at a Nursing Home.
- I can smell things from a mile away it seems. I can smell my neighbor's cooking. (smells good) We walked our dog this weekend and I could not believe that I could smell how stinky he was. I does not bother me. (he did get a bath though) I am just amazed that I can smell things now.
- I had a reaction to the mold. I don't know if this is new for me but the mold has been up in Austin because of all the rain and my throat was draining and my nose was stopped up and my eyes were watering. These symptoms were mild and have decreased quite a bit. One nostril is still a little stopped up.
We went to the IMAX yesterday to see Sharks and it was great. We were looking for a bathroom and my husband decided to go up some stairs and I followed him. It was 4 flights. I was ok after that flight of stairs but I was still a little winded. When we went into the theater he decides he wants to sit all the way at the top. So, I hesitated and then I proceeded to climb the stairs to the top. Boy was I winded and wheezing on top of that. He got nervous because it took me about 5 minutes to catch my breath. The wheezing went away once I got my breathing under control. We watched the movie, went and had dinner and came home. The last time I was winded like that, I was very out of shape and had just started working out using Paula Abdul's get up and dance. After about a month or so, I was doing it without effort.
I was kind of disappointed and sad because I have been walking for 1 mile in the morning and thought I would have been in better shape. My weight is still up and down and I need to get it under control. So I will keep on pushin. I know we climbed about 8 flights of stairs and I shouldn't be so hard on myself but I am. I will get there I know. My calfs are sore from the stairs. I have been on the MP for 2 1/2 years and I feel like I am still making progress toward my recovery. It may take me another 2-4 years but I don't mind because to date;
- I no longer wheeze when I am talking
- I no longer have to do the downward dog to unclog my airway
- I no longer have insomnia
- I no longer have soaking night sweats
- I no longer wheeze after my walk in the morning
- I no longer wheeze after mowing the lawn
- I no longer fear for my life, I have hope for a future.
It is so amazing to see this protocol working just the way Dr.M said it would. Will I go up the stairs at a fast pace again? Maybe not 8 flights but I will continue to try to build my endurance. I know I would not have climbed 8 flights of stairs 2 years ago. 4 years ago I was walking up three flights every morning to get to my floor and I was winded just a tiny bit and would quickly recover. And as the lymph nodes decrease in my chest, my airway will be more open and I will have more stamina. I shall keep on keepin on....................
Happy MPing
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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SherryH
Member in Phase 2/3
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Posted: Tue Jun 26th, 2007 02:44 |
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Saj,
Your posts filled with your progress ae always so encouraging to me. Thanks so much for sharing. I'm thrilled to hear of your continued progress and the consistency of your gains.!
Sherry
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Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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wytnez
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Posted: Fri Aug 3rd, 2007 01:41 |
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Hey MP family,
I wanted to check in. Things are going well. I am exercising 5 days a weeks walking 2 miles in the morning using Leslie Sansone's walk away the pounds and we walk our dog every Saturday morning about two miles at a park near my home. It has hills and let me tell you on the second time around the park my legs can feel the muscles working. The lungs do great! We do a moderate pace because my dog (Roc Johnson) thinks he needs to run up to every tree to mark his territory.
Went to Whole foods today for lunch with my Director and a coworker and we ate on the top floor. Went up one huge flight of stairs with no problems at all. It is such a blessing. Right now tears are falling because I remember where I was. I was working out doing tae bo and I remember wondering why I was wheezing. And one time I felt like I was going to faint because the wheezing was bad. Now, I can talk, I can sing, it is so amazing.
Trevor, thank you from the bottom of my heart. I am not fully where I want to be, this is a journey, but I will get there.
Anyway, I have to clean my house real quick and do some work from home so that I have my weekend to spend with my family. I don't know, maybe we will go to McKinley Falls National Park and hike. I feel so good, who knows......
Today, I feel so happy and Blessed. Happy MPing.
  
Well not quite the rock climbing type : ))
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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wytnez
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Posted: Thu Sep 6th, 2007 03:55 |
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Hello MP family,
I cannot believe it has been over a Month since my last post. The more I intend to do better the worse I do. I apoligize for not posting more. I am always checking in on everyone, I guess I just take for granted that my progress will help someone. I will see my MP Doctor tomorrow. My last cholesterol test was a little high at 205 so I am going in for a repeat test. Everything else is going good.
My IPs are very managable. I have not had any wheezing on exertion. Sometimes I can still hear a little whistle if I am really working out but not too often. My airway feels alot more open. When I yawn deeply I can fill my lungs up really good and when I exhale, I don't hear that wwwhhisstllle. I don't feel the lymphnodes sticking together like they used to. I have been feeling really good. I walk briskly every morning and I bought a pedometer to help count my steps. My only problem is my weight. I have got to lose this weight. I keep going up and down.
I went to Galveston this past weekend for an appreciation party for my Aunt. Our hotel room was on the second floor. I had no problems climbing the stairs and I actually had a bit of a pep in my step.
In the past walking and talking would make me feel like I had air hunger but I noticed that when I am consistantly working out, I don't have that air hunger when walking and talking.
Things are so busy at work. I am excited about some new things that may be going on in the next year. Should be very good for my career. Hopefully we will get to hire on two new people which should decrease my work load. Well, I am off to get ready for Church tonight. Well huge hugs to all and I will be in touch soon.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Aunt Diana
Moderator
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Posted: Thu Sep 6th, 2007 08:26 |
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| It's good to hear from you Wytnez.....don't forget about us. We love hearing your progress and we're still waiting for that song.
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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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jrfoutin
Research Team
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Posted: Thu Sep 6th, 2007 09:05 |
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As always Wytnez, you inspire me to want to do more.
Wow and congrats on all your recent improvements! I'm still weighting for the wait too... or the other way around (wink).
Keep us posted!--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, 10/08 25D6.9
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wytnez
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Posted: Sat Feb 16th, 2008 04:14 |
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Happy Belated Valentines Day MP fam,
It has been a very long time since I have posted, I do apoligize. Life has been very good. I have been working alot and when I get home I really don't want to be on the computer since I am on it all day at work. I do lurk to see how everyone is doing. I went on a little break from January 11th to present. This is my first MP break since I began in Jan 2005. I was a little hesitant at first but I am glad that I took it. I am ready to get back in full gear and finish killing these little nasties.
Non MP meds: none
Light exposure: to and from work. 10-15 minutes both ways. Noirs outside, regular glasses in.
No Vit D in diet.
I will start back the MP after I see my MP Doctor this coming friday.
Will begin Benicar 4x a day for two weeks to get my blockade back in place. Then will begin mino at the lowest dose and work my way up to Phase 3 again.
Sx: None really. I had a little pain in my thumb. My throat was a little scratchy causing me to cough. Drinking plenty of water helped. No wheezing. I did notice the cloggy feeling in my chest a little bit when I began my break but that has since ceased to nil. My menstrual cramps were really bad these last two cycles. I had to take a vicodin that was left over from my husbands tooth surgery. I never take pain pills.
Other than that, I have been walking on my treadmill for 35 minutes in the morning. The speed is 2.5. That is a good brisk walk, nothing to fast.
I was very sad to hear about Morris. He was such a great example of endurance and tenacity. I will really miss him. He fought strong and hard.
I will post after my Doctor's appointment and run my game plan by the moderators.
Happy MPing.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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