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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 556 |
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Posted: Tue Mar 2nd, 2010 21:39 |
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Mindy,
First focus on this:
but compared to how he was before MP in regards to coughing its a lot better
Then work the 'Managing Immunopathology' guidelines in the link Joyful sent.
Sarcoid is downright scary all by itself. I was 33 when it first hit, and scared the h*ll out of my wife many times before I started the MP at 54. And the MP didn't set well on her nerves either.
Have you tried the guaifenesin suggested a bit earlier? This will help with the cough and maybe some of the fatigue. How about quercetin? Drinking plenty of water? I know these are the simple things, but you didn't mention them.
Backing down on the meds can help. But it was more of a help in phases 1 and 2 for me. And you don't get to go back to the phase 1 situation just by switching meds. Your hubbies immune system is working now, better than it was in phase 1. Catching a cold might just have put it into high gear for a while.
Does his trouble follow the two day or ten day abx cycle? If it does, then backing off the antibiotics is more likely to help than if the trouble is constant - in my experience anyway.
This too will pass.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Mar 4th, 2010 00:50 |
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Hi Chris,
Thank you for all your information. Larry has and does use guaifenesin as needed but I was wondering if he should use it for a while not a long period of time but long enough to get things moving out of his lungs and chest? I have no idea what quercetin is but have read about it and will look into it for an option. As for water intake he does not drink a lot of water only to take his pills or when he isn't feeling well, I have been pushing the water issue with him. I guess we still don't know what an IP is really, didn't know that shriveling of the lungs was an IP. The weight loss I have read about but worried us since sarc caused him to have weight lose I wish he would pack on a few pounds! I reviewed the info from Joyful and will be speaking to Larry about everything and hope this will pass, it's gonna be a long road to recovery but it will happen!
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Deedee
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Posted: Thu Mar 4th, 2010 01:15 |
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Is the sinus drainage clear or is it green or yellow? I have had a lot of sinus drainage at points in the MP, and remember one time it was so great it felt like a creek running in the back of my throat. Gross, I know, but it did clear over time and I think that in my case it is bacterial killing from the chronic sinus infections I had in the 1980's. Mine were so bad I had thickening of my sinus on Xray. It feels like things are opening up more and more for me in this department. I don't know if this is like what your husband seems to have or if you think it is a sinus infection?
Here is a link on how to manage IP, and as you will read the first step is to drop back on the antibiotics. Zith has a reputation for provoking hard IP.
http://mpkb.org/doku.php/home:mp:managing_immunopathology
I am glad to hear he is breathing better.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
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Posted: Thu Mar 4th, 2010 21:29 |
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Hi Mindy
I have been adding a little good quality olive oil to my vegetables, that together with snacking on nuts when I watch TV has kept up my weight. Now I have gone over to bactrim I also get hungry as an IP, so sometimes eat far too much.
I think as long as Larry can make himself more comfortable with the permitted aids like Guaifenesin, it may be ok to stay at the same high level of meds.
My experience suggests dropping back one level may help or may not. I usually start to get my significant IP one level below max, and when those symptoms start to get more bearable and I go up, the next level does not get worse , even if I need to stay there for months because more different herx are showing up.
Larry is the best judge of whether it is getting a bit much. It is great he has support and encouragement on hand.
Just about anything can be herx !!
Feeling awful for ‘no reason’ is also herx. The test is if extra benicar calms it down.
Feeling depressed, anxious, losing trust in the process or in your support people is also herx. Been there done that
Think about what Chris says about 2 day patterns and ten day patterns. If Larry can not keep a record, you may be able to: good luck with it
S
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Mon Mar 8th, 2010 17:19 |
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Hi Sallie,
Thanks for your response it's really nice to hear from others! I know I read some place on the site that not wanting to eat is normal but Larry doesn't really eat like he should, I suggested to him to eat his breakfast, snack, lunch, snack then dinner finish off the night with sugar free choc or something light. He eats lunch and then dinner and that's it, so probably not eating well has caused him to drop weight. I will tell him about your suggestion.
I told him he may want to drop back a level but he said no so I guess he is doing fine, for the most part it scared him to have shriveled up lung feeling with weight loss which I don't think he has lost weight by my eyes. I know everyone has different IP's just never thought that shriveled up lungs was one of those feelings.
Deedee- Larry has a lot of sinus drainage and he has always stated it runs like a creek but as far as I know it's clear.
All of this shall pass and soon I hope he starts gaining weight to his skinny bottom! It's just alarming when it sounds like sarc symptoms are coming back, he has been on MP 17 months now and really looking forward to getting him cured! If it happened for Dr. Marshall then I know if will happen for Larry and everyone else!
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Chris
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Posted: Wed Mar 10th, 2010 17:26 |
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Mindy,
I'm on Larry's side on the not eating. For a long time, I felt like crud after every meal, so fewer meals were better. And by feeling like crud, I mean that I had to head for the couch or bed and lay down before I feel down because I was close to passing out. There was no after-dinner discussion at Thanksgiving for me, I'd miss dessert and not wake up until the company was gone.
Large meals, and turkey at any meal, still make me a bit tired, but it's a minor echo of previous problems.
For someone with serious sarc troubles, this is not a 2year sprint. Let him choose how to be comfortable.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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