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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 16 |
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Posted: Sat Jun 28th, 2008 04:58 |
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Hi Mark,
I have that screaming herx now in PH1! I dread the morning ritual
Did anything help you that would by OK on the MP. I have not done a search on the site yet, I'm taking a short cut straight to you[
I gave Leanne your name and suggessted she PM you for Dr. info. She's having a heck of a time there in NC.
How is everything going for you these days? California is on fire right now but life at home and work is good.!
I have charter on demand which has been very intertaining. I did not even know I had this for over a year! I never had time to watch movies non stop. Its kinda cool........Feel sick, push play.
I'm Thankful for the little gifts
Happy Herxing.........
Karon
Last edited on Sat Jun 28th, 2008 05:14 by Karon
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 60 |
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Posted: Sat Jun 28th, 2008 06:34 |
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Hi Karon and all,
I'm experiencing a lot more fatigue and just can't imagine how the folks that already are diagnosed with CFS can handle even more of it with herxing. My initial diagnosis is RA, but I've tested positve for some lyme, too. Not enough for the CDC to call it Lyme, though. Karon, I have twin soon to be nine year old boys and like you am heartbroken that they have to see mommy so sick. When I look back at their lifetime vantage point of their mom, I've had a broken bone in my back, and severe pneumonia twice. and a broken hand. I hope I have caught my RA early enough with MP to reclaim some of that childhood time with them. I really want to go canoing and teach them how to golf.
I am inspired to get more Wii games that I can also play with them. Many of their Wii games are very 9 year old boy. Mark, if I can get a hold of a Mario Kart in a store, I think that will be my ticket to playtime with my kids. We're sold out in my town. A mommy mission to be sure! If anyone can suggest some multigenerational Wii games they enjoy while herxing, I'd love more ideas! (Wii golf is just too fake for my purist golf tastes.)
One great thing about MP is that my RA pain is much more tolerable. Those previous pneumonias will have my ribcage herxing for years, though. 
Nighty-night
MicheleLast edited on Sat Jun 28th, 2008 06:36 by Michele MBK
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RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
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kenc
Member in Phase 2
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Posted: Fri Aug 22nd, 2008 00:20 |
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Clair,
Living with a severely sick partner year after year must be difficult. I'm surprised my partner hasn't dumped me yet! With no end in sight yet who knows what she might do. We are not the easiest people to live with.
Ken
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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expate
Member in Phase 2
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Posted: Fri Aug 22nd, 2008 02:23 |
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Ken,
Did you see the new Care Givers Forum that is in this forum? Could be interesting for you.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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kenc
Member in Phase 2
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Posted: Fri Aug 22nd, 2008 04:24 |
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| Not yet. There's so much good information here!
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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expate
Member in Phase 2
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Posted: Fri Aug 22nd, 2008 04:28 |
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I have to say, I'm putting my husband to the test with this one. So far, he's coming up smelling roses. But it's definitely something we will need to constantly navigate.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Fri Aug 22nd, 2008 07:23 |
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Ken, I know you are right. Even though I am easy going, it is difficult to watch someone be sick. It's difficult for me to watch my mother; mainly because she heaps a lot of emotional pain onto herself over and above the physical pain and limitations she experiences (and I don't think it is all Th1 depression, but an approach to life she has had her whole life).
Caregivers must take care of themselves and try not to become martyrs. I was aware of some of the pitfalls of being with a disabled partner and tried to get my partner to take care of herself, talk with me, and get into counseling (and my partner had fewer duties around the house than if she lived by herself...I made sure of that). She confessed after deciding that she needed to leave (and wouldn't even consider that it was burnout that she could recover from, as going after greener grasses seemed like the best solution) that she had been martyring herself and also wallowing in her pain and mine.
I don't wallow in my pain; I don't have much if any emotional component associated with my phyiscal illness (except for a minor pity party here or there). I'm not struggling against myself most of the time and I really accept where I am and enjoy myself most of the time--I just flat out love life. It was weird for me to find out someone was wallowing in my pain when I'm not doing that. My pain and my limitations just ARE.
My ex-X's self esteem is not good (and she has never got how I could, as sick as I am and coming from the background that I do, love life so passionately), and I think she used my illness to also get attention from others, which meant she wasn't very motivated to get the help she needed so she wouldn't burn out. Had I thought she was doing that or even had an inkling that she was using my disability to get attention; I would have insisted on couples counseling. However, we can't always know what's going on in another person's head.
And, you know, there are people who love their partners and they stay. They understand that life is capricious and that you can enjoy your life regardless of that capriciousness. (Besides greener pastures can turn brown in a flash.)
I'm glad there is now a thread for caregivers. I've given it to my friend who has moved out from California to live with me and care for me while I'm getting well on the MP.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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expate
Member in Phase 2
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Posted: Fri Aug 22nd, 2008 13:47 |
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You guys continue to amaze me with your strength, fortitude, and zest for life. I am such a wimp by comparison. 
I spent a lot of my life kind of hidden and fearful. Difficult childhood and all that. I struggled with depression (much better now, thank you  ) and came to a time when I really didn't see the point in continuing. Thankfully, I got into therapy. And now, with the MP, I had one day ( and look forward to having more) when I felt so good and grounded and alive that it all made sense to me.
You know, that's one thing about the character Novalee from "Where the Heart Is" that seems very like you, Claire. I remember reading the book and marvelling at how nothing stopped her from living her life, feeling, getting up each morning and taking on the day. I never understood how she could do it. IDK.
Oh, and I'm glad your friend is there to help you.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Freddie Ash
Member in Phase 3
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Posted: Sat Aug 23rd, 2008 00:02 |
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HI ALL
This is Fred in WV. I hope this is alright to post on this one. I had a very bad day with my IPs. I take Benicar are 5:30am each morning. Them I am out the shoot for the day.
Today at 8:30am I had racing heart rate of 116. Then I had a migraine hit that lasted 30mins. At the same time I was hit with a nosebleed that lasted for 5 mins. So I had 3 bad things going at the same time. My heart has rased all day but I have been taking the Benica every 3hours today and just keep going but not as fast.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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JanEE
Member in Phase 3
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Posted: Sat Aug 23rd, 2008 00:30 |
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Hi Freddie,
Sorry to hear about your bum day. I'm pulling for you---to have a better one tomorrow---or even later today wouldn't be a bad idea. Feel better!
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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expate
Member in Phase 2
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Posted: Sat Aug 23rd, 2008 00:38 |
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Glad you posted here, Freddie. I hope you are feeling better. Keep taking that Benicar and rest up.
Hang in there,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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suecat
Member in Phase 2
| Joined: | Thu Feb 14th, 2008 |
| Location: | |
| Posts: | 70 |
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Posted: Sat Aug 23rd, 2008 02:44 |
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hi freddie,
Hope you are out of the woods at this point with the IP. I pray your sleep will be restful and deep.
sue
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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Freddie Ash
Member in Phase 3
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Posted: Sat Aug 23rd, 2008 14:26 |
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HI ALL
This is Fred in WV. Just checking in to let you all know about things are this morning. I took Benicar all night long at every 3hours. My heart rate stay high all night long. I slept good but woke up very hour or two. So I took the Benicar at 3 hours. This morning my heart rate was 95 at 7:30am. I just took it at 9:20am at it is now 84. So I think I am back on track again, thanks to the Benicar and the Marshall Protocol. I will try to rest most of the day.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
| Status: |
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Posted: Sat Aug 23rd, 2008 18:56 |
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Yeah Freddie!!! Yeah!!! 
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Adrianne
Member in Phase 3
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Posted: Sat Aug 23rd, 2008 23:20 |
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So glad that you are getting back on track, Freddie! In my experience, also, Benicar is truly a lifesaver. I remember how effective it was when I was in Phase 1 and having some very frightening cardiac episodes. The extra Benicar really helped to calm it down.
Thanks for pulling for all of us!
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 600 |
| Status: |
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Posted: Wed Aug 27th, 2008 02:04 |
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Freddie,
I am so happy that you are doing much better with your heart rate. I imagine that is very scary but you are doing the right thing by using the Benicar to dampen the IP. I am pulling for you too!!!! Thank you for being an inspiration for us.
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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