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Deedee
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Posted: Mon Feb 8th, 2010 15:09 |
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| Yeah!!!
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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EMarie
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| Joined: | Wed Aug 12th, 2009 |
| Location: | USA |
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Posted: Tue Feb 9th, 2010 10:36 |
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IP started around 3 hours in with the same brain fog, some internal shaking like I had too much caffeine, which I had not.
I notice that when I take my Mino around 6-7 am, it's around 10 that I start herxing. Around 12-1 pm is when it seems to be at its worse, then starts lessening where I am feeling quite normal come around 6 pm.
BP was good at 108/68 Pulse was 95
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Tue Feb 9th, 2010 10:37 |
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Hopefully..will get my blood work results today.
Last edited on Tue Feb 9th, 2010 10:41 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Thu Feb 11th, 2010 11:39 |
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Still waiting on the blood tests. <sigh>
Yesterday I had next to no brain herxing. Thank goodness. I am always concerned due to my MWF days are also when I pick my grandkids up from school.
I had a little, and I mean a LITTLE bit of pain in the center of my chest. Definitely stuff going on with the nodes in there.
BP 106/66 Pulse 86
Going to do the 50 mg for another week or so, then ramp up.
Oh yeah, and I have lost 8 pounds in the past 2 weeks cutting out all the "whites" in my diet.
Last edited on Thu Feb 11th, 2010 11:42 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Thu Feb 11th, 2010 20:38 |
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Well I started a new topic needing help with all of this. I am scared.
My CHOL/HDLC ratio is bad at 7.5
My cardio CRP is high at 5.1
My D3 is <4 They had the arrow there as well as commenting that they redid the test 3x to make sure it was accurate.
My D2 is <4
My D-125 is 27
What concerns me is how all the medical literature states that low D and Folic acid can cause heart issues.
Last edited on Thu Feb 11th, 2010 20:39 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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EMarie
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Posted: Thu Feb 11th, 2010 22:29 |
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| Well, this explains that weird twitching I have been experiencing for 4 months now throughout my body. It is called Ricketts from vitamin D definciency AND what is probably causing the issues with my heart as well Last edited on Thu Feb 11th, 2010 22:30 by EMarie
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Sarcoidosis Diagnosed 2001. 40 mg Benicar every 4-5 hours. Mino 50 mg Mon-Wed-Fri. Noirs inside and out.
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Joyful
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| Joined: | Fri Oct 19th, 2007 |
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Posted: Fri Feb 12th, 2010 02:50 |
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Hello Elaine. 
I hope you have read enough of the MP literature to understand that your disease is causing the low 25-D levels and not the other way around?
The 1,25D level you report is within normal limits. This is the active metabolite. That means that your body has enough of the active metabolite to absorb calcium from your diet.
Please read: http://mpkb.org/doku.php/home:tests
If you do a search on rickets in the Google Custom Search box on the upper right corner of the page you will find out some important scientific information about why a lower 25D is not the cause of rickets.
I say this next sentence with hope that you will know I am very concerned for your well-being. ... If you are not able to engage in learning about the science behind the MP, you will probably be unable to engage in constructive dialog with your healthcare providers when they are working with incomplete or older understandings of disease. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
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Posted: Fri Feb 12th, 2010 04:23 |
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Wonderful result Elaine
Congratulations, you have got to the target that most of us are still struggling to reach
My tests came in last week and yesterday
'less than 5 ng/ml' for D25OH and 30.4 pg/ml for D 1,25OH
huzzah, now I know why I have been herxing so much more particularly in our hot weather, which tends to increase my IP anyway.
I do not have to avoid seafood or eggs anymore, I'm so pleased, so is my doctor (I am one of the lucky ones who does not have to negotiate with the doctor, except re going more than 3 hours trip from home, she will not yet allow that but I live in hope.
! I actually live in Sydney, but my USA grand-daughter is called Sydney :-)
you are lucky, you have ~3 hours after Mino before herxing
anyway, with your new blood tests, you will not have to fight to get D metabolites down anymore, just stay out of the sun and manage anything you take beside the Olmesartan, very, very conservatively.
You do not know how long it will take to clear your nodes. Sorry Barb did not have time to follow up with you. Plenty of others with dire illness and extensive experience and understanding of the MP will help if you can be patient and keep asking until you find out (with a little help from your body/mind)
Good your brain herxing has let up! If it has ;-)
I find that the hardest to bear are the brain fog, when I forget stuff I know is in there somewhere, the paranoia [something new] ;-)
- the communication problems caused when I get emotional and that is misinterpreted by others (who are generally pretty good about understanding that I am both benefit from and contribute to the research done here)
I now wonder if your immune system may be recovering so well that is why you got a more usual (to healthy people) reaction to 'having a cold'. I am pretty sure I am not that well recovered yet.
Not long now, I hope. I seem to be right on target considering how long I have been ill ;-)
Sallie
Last edited on Fri Feb 12th, 2010 04:40 by Sallie Q
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Sallie Q
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Posted: Fri Feb 12th, 2010 04:29 |
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Thought that twitching of yours might be fasciculation (I get that a lot)
Wikipedia says
A fasciculation [fə.ˌsɪk.ju.ˈleɪ.ʃən] (or "muscle twitch") is a small, local, involuntary muscle contraction (twitching) visible under the skin arising from the spontaneous discharge of a bundle of skeletal muscle fibers. Fasciculations have a variety of causes, the majority of which are benign, but can also be due to disease of the motor neurons.
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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