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busytchr
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| Joined: | Mon Sep 28th, 2009 |
| Location: | USA |
| Posts: | 24 |
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Posted: Thu Nov 19th, 2009 19:21 |
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Hi MP friends,
I have been cutting back on Vit D for the last 3-4 weeks. No fish, no sun, and no milk. I could possibly be getting a tiny bit in prepared foods, but I am also watching labels.
I feel better already! I have not begun any benicar or mino, only vitamin D reduction. This is a good starting point: my breathing is easier, my chest pain has gone away, and I am sleeping better. I am certain that my summer flare was due to trips to the beach, gardening in the sun, and eating lots of seafood. Unknowingly, I was making myself sicker with Vit D.
I am sticking with this plan for now, as I have no MP doctor. However, I did contact my doctor in Kansas who treated me with Cytomel years ago, before it was an approved treatment for hypothyroidism. He is friendly toward the MP also. He suggested that I try it, but I will need to travel to KS for a physical first. This may end up working out for me. He is in the Topeka area, if anyone out there is in that area.
Feeling better already, and looking toward the future!!!!
Tamara
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Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Sun Nov 22nd, 2009 01:12 |
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If you can't convince your current doctors to prescribe the MP, you'll just have to go "doctor shopping". It's an unfortunate reality that the possibility of liability for using an "unapproved" treatment outweighs the possibility of helping patients with it for many docs, and others just don't have the time or inclination to research anything new.
This KB article has some tips: http://mpkb.org/doku.php/home:starting:physician
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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RM
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| Joined: | Thu Jul 9th, 2009 |
| Location: | United Kingdom |
| Posts: | 83 |
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Posted: Sun Nov 22nd, 2009 07:35 |
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Hi Tamara,
Just a thought, when i eventually found my Doc i had to sign a waiver he drew up basically saying i knew it was an unapproved treatment, it was at my request and he wasnt liable. I was happy with this as i also had the same improvements on D reduction and this got me started on the full MP.
If your happy with it its maybe something you could inject in to the meetings with the Docs.
Good Luck
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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busytchr
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| Joined: | Mon Sep 28th, 2009 |
| Location: | USA |
| Posts: | 24 |
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Posted: Tue Nov 24th, 2009 13:26 |
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| Thanks for the encouragement! Yes, I think a waiver may be indicated for some doctors. I plan to continue getting better from here on out. When I manage to find the right doctor/situation that works, I will be on the MP, whether that is this month, or next year. I know it will happen at some point soon. Thanks for the links, as well.
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Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.
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busytchr
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| Joined: | Mon Sep 28th, 2009 |
| Location: | USA |
| Posts: | 24 |
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Posted: Wed Jan 20th, 2010 13:49 |
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Hi friends,
After a couple of months avoiding Vit D and feeling much better, I have recently begun a slide into feeling lousy again; depression, fatigue, feeling of having to "work" to take a breath, and dry, inflamed eyes. The light is bothering me more and more.
Is it possible I am suffering the effects of a bit of herx simply from avoiding D? I have a Dr. appt on Monday, and will talk to my family doctor about the MP. T he last time I was there, I left her some articles from the website. My blood pressure is creeping slowly up into the 125-135 range for the top number. For me that is high, as I have always had BP about 104/60.
Question: If she is willing to give me Benicar in a typical dose for high BP, would that be a good start? Or will it make me feel even worse if I don't have the four X a day dose recommended for the MP? The last time I talked to her, she seemed open to Benicar, if it were for BP. But this might mean a lower dose than I need. What suggestions do you have that might assist in getting the full required dose for the MP? Do you think a lower dose would be helpful or make me sicker?
I am going to order the NoIRs right away, just in case. Thanks for your help.
Tam
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Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.
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busytchr
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| Joined: | Mon Sep 28th, 2009 |
| Location: | USA |
| Posts: | 24 |
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Posted: Wed Jan 20th, 2010 13:50 |
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Hi friends,
After a couple of months avoiding Vit D and feeling much better, I have recently begun a slide into feeling lousy again; depression, fatigue, feeling of having to "work" to take a breath, and dry, inflamed eyes. The light is bothering me more and more.
Is it possible I am suffering the effects of a bit of herx simply from avoiding D? I have a Dr. appt on Monday, and will talk to my family doctor about the MP. T he last time I was there, I left her some articles from the website. My blood pressure is creeping slowly up into the 125-135 range for the top number. For me that is high, as I have always had BP about 104/60.
Question: If she is willing to give me Benicar in a typical dose for high BP, would that be a good start? Or will it make me feel even worse if I don't have the four X a day dose recommended for the MP? The last time I talked to her, she seemed open to Benicar, if it were for BP. But this might mean a lower dose than I need. What suggestions do you have that might assist in getting the full required dose for the MP? Do you think a lower dose would be helpful or make me sicker?
I am going to order the NoIRs right away, just in case. Thanks for your help.
Tam
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Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 585 |
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Posted: Wed Jan 20th, 2010 15:57 |
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The light is bothering me more and more.
Is it possible I am suffering the effects of a bit of herx simply from avoiding D?
Answer - Yes, dropping D levels can make you feel worse. Whether it's herx, or bouncing hormones from going into and out of light is hard to say.
Question: If she is willing to give me Benicar in a typical dose for high BP, would that be a good start?
No. You'll get the activation of your immune system and more herx, but without the benicar blockade to protect you.
http://mpkb.org/doku.php/home:mp:mpmeds:olmesartan:dosing
You might also want to read: http://mpkb.org/doku.php/home:starting:physician for suggestions on getting the doc on board.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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RM
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| Joined: | Thu Jul 9th, 2009 |
| Location: | United Kingdom |
| Posts: | 83 |
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Posted: Thu Jan 21st, 2010 06:19 |
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Hi Tam,
Thats exactly where i was with my doc and he suggested he same ~ im glad i didnt take him up on it. You could try the waiver suggestion from my earlier post?
Good Luck
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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Angie Toronto
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| Joined: | Sat Feb 13th, 2010 |
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Posted: Sat Feb 13th, 2010 21:35 |
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I was diagnosed with Sarcoidosis (Sarcoid) on December 23rd, 2009 with biopsy from my nose, MRI and chest X-ray, eight months after I got sick. I was one of the lucky ones to be diagnosed in such a short time for Sarcoidosis, due to a granuloma on the left bridge of my nose, enlarged lymph nodes, itchy sculpt, skin rashes on the left side of my neck, which is called Erythema Nodosum. I also had weight loss, chronic fatigue,cramps, chronic joint and muscle pain,blurred vision,red eyes, night sweets and fever.
So far my nose, eyes, thyroid and lungs are affected from Sarcoidosis. When the Sarcoidosis started on April 2009, I was taking two year Dental Hygiene Diploma program at Canadian Business College(CBC)and I was at the last semester. I was unable to finish my career at CBC, due to Sarcoidosis and its negative affects on my health.I have a feeling that I got the disease from the school's clinic.
I was refered to a "Sarcoidosis specialist" at Mt.Sinai Hospital in Toronto who does not follow MP. He told me that I was at the first stage of Sarcoid and we should wait and see, because it could go away without treatment. I will not accept this. Therefore, I would like to find a doctor in Toronto who follows the MP. Would you be able to help me with that?
And also how can I prove that I got the disease from the School's clinic?
Thanks.
Angie.
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 585 |
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Posted: Sat Feb 13th, 2010 22:44 |
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Angie,
And also how can I prove that I got the disease from the School's clinic?
There's no current way to prove anything about where you got sarcoid, or what the tipping point was. There's likely more than one bug involved. Maybe you picked up something at the School's clinic that was the tipping point, or maybe that was just where you happened to be when the pot boiled over.
Most of us here report a number of minor troubles leading up to the sarcoid diagnosis. It's not been the general experience that it happens to a totally healthy person.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Marysue
Board Staff
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Posted: Fri Apr 2nd, 2010 06:34 |
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Hi Tam--
Just checking in to see how you are doing....
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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busytchr
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| Joined: | Mon Sep 28th, 2009 |
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| Posts: | 24 |
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Posted: Sat Apr 3rd, 2010 13:53 |
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Hi Mary Sue,
I am in that no man's land between fending off sarc by avoiding Vit D, and finding a Dr. to work with. My doctor locally said no to MP in March.
Secondly, I had a bad bout with a misplaced rib last month. I think the costochondritis is stirred up by the ongoing chest changes with lymph nodes in sarc. The rib pain was terrible until my chiropractor put it back in place, but it caused some arthritic spots to flare up, so I couldn't use my right shoulder very well. I was taking Diclofenac (a prescription NSAID) for a while, then finally put two and two together to figure out that the NSAIDs cause my heart palpitations that wake me up and cause insomnia. I have been a train wreck for the last month. Now somewhat more stable.
Also wondering if I should just go and apply for disability. I am still working, but it is so hard sometimes. If I manage to find a Dr. to give me benicar, and discover that I can't bear the light at all, I don't know how I will manage. Will taking benicar as a non-standard treatment prevent me from getting disability?
Sorry I am a negative mess right now. Looking forward to the Resurrection tomorrow!
Thank you for thinking of me. It means a lot. Tam
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Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.
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Marysue
Board Staff
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Posted: Sun Apr 4th, 2010 05:23 |
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Hi Tam,
Thanks for the update. I see that you've been doing the D-restriction since last October. I started the D-restriction in Oct.'08 and by Mar.'09 I was miserable and exhausted from the whole process of trying to find a doctor and get started on the MP. I know it's a whole different world trying to start the healing process without Benicar. Once you can somehow get started though, even with the immune activation, Benicar really does help a lot with the inflammation.
I had heart palpitations with NSAIDS (even Ibuprofen) so I really couldn't take anything and Benicar was a huge relief.
I hope you'll be able to get some support soon.
If possible, I would recommend applying for disability now just based on your diagnosis. If you can/need to include the light sensitivity, then add it in, but it may not be necessary. If you have trouble and have to keep working, it may be harder to apply later.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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