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Deedee
Member in Phase 2
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Posted: Tue Mar 31st, 2009 14:35 |
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Thanks for the clarification. Have a great day.
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 763 |
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Online
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Posted: Tue Mar 31st, 2009 16:39 |
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Thank you Ken.
I expect my reaction to everything, including Benicar, to change over time as my own personal eco system changes on the MP, and so I keep an open mind about re-trying everything I have stored in my MP tool kit.
I appreciate hearing from people, however, who confirm what I expect will happen...sooner or later, I'll start responding to Benicar like most other folk. (I'll be so glad when that happens, as I hope that means I will have turned the corner on this illness.)
Thanks again, Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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kenc
Member in Phase 3
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Posted: Tue Mar 31st, 2009 20:24 |
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| Could the sunshine be stimulating the production of 1,25-D as a local immune response to repair the UV radiation damaged skin rather than the sunshine providing a way to produce and accumulate 25-D for some future need? If it does both, where is the evidence for the latter? Last edited on Tue Mar 31st, 2009 21:43 by kenc
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Kas
Member in Phase 2
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Posted: Wed Apr 1st, 2009 14:56 |
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Does this mean, that after about 3 years of being on Benicar, I should be able to tolerate a bit more 'normal' sun exposure than in the early days?
I find I now do not need my indoor Noirs - even find them too dark in my classrooms, but still mainly wear them there due to the flourescent lighting, and I also find I am fine with driving to and from work or stepping outdoors without gloves or face coverage or wearing sandals( in the warm weather), but I do still use Kabana cream on exposed skin, and I still do wear my darkest Noirs in bright light. With all of this, my felt IP's have not been different at all. However, as I slowly increase my abx, I realise things could change up and down here.
Still, it is rather a nice thought to be able to be less of a vampire than before, for now!!! I like the fact that my students see my eyes more often and it certainly does make a difference when you talk to people to actually look them in the eye!
I do not test my 25D too often, as it has been consistently so low ( not even readable) for so long now, and I am very vigilant about what I eat. I have even stopped testing my way below normal 1.25D, as I know it makes no difference on the MP. So, for me, every 6-9 month testing seems to be in order.
Last edited on Wed Apr 1st, 2009 14:57 by Kas
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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JanEE
Member in Phase 3
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Posted: Fri Apr 3rd, 2009 08:15 |
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My experience with light sensitivity was of it lessening gradually and was finally gone when, like most of you, I found I had trouble seeing in the very dim light indoors. At the end of phase 2, because I had been feeling so well, I even tested the limits by being in the sun at a fiftieth anniversary party for my daughter and son-in-law. I suffered no ill effects at all. In fact I felt great and thought this was truly the beginning of being completely well. However, I didn't consider it an invitation to be out in the sun and didn't push it by continuing to be outside like that. I went right back to my comfortable dim light in the house, my "uniform" of covered clothing and always wearing glasses when driving somewhere.
Several months later, and on phase 3, it became a different story. I don't know why it took several months into this phase to hit me, but I began to have more IP than ever. While my light sensitivity didn't return anywhere near full force I have found that my outdoor sensitivity can increase slightly on the days that I am having more IP. It stays the same in the house. Even my levels of 25D have been gradually increasing, but with no change in diet or exposure. In fact, I've had even less exposure outdoors than before as Meg had told me I shouldn't be working in my garden so much. I had only been going out in the evenings a couple times a weekup until the beginning of summer last year, but then did almost no gardening at all. One look at my garden tells that story. My doctor retests my D levels every three months and the January results were VitD 25-OH Total-10; D3-10; and D2-<4. I'm taking an extra Benicar each day and even some sublingual when needed, but it doesn't seem to help much. My IP is still quite strong.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Offline
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Posted: Wed Apr 29th, 2009 00:58 |
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Interesting discussion on light sensitivity. I think the neurological symptom increase for me makes being in the sun completely out of the question at this stage... but later? It would be nice to join my family on outings when I feel better.
My husband and I signed up with the home testing via the D-action site (grassrootshealth.net) not because we agreed with their view of how things work, but simply based on the cost & ease of in-home testing.- In June 2007 I paid over $230 out of pocket to Quest labs for my first 25-D test.
- I paid an untold amount in emotional grief getting the 25-D tests ordered by my PCP at the HMO. It was like running a gauntlet, especially as the numbers got lower and lower.
- I paid $30 at the D-action site to get my latest test. So far, they haven't sent anyone to my door to force vitamin D pills down me, but maybe they will later...
However, before I could log in to see my test results from their site, I had a good look at what kind of information they are pushing... sadly.
I think it is good that people on the MP are participating in their study so their results are more representative (by including already chronically ill people).
Today the front page had a chart showing the results so far... over 1,000 participants enrolled.
As of 3/5/09, the numbers are: (ng/mL)
< 10 1%
10-20 6%
20-30 19%
30-40 25%
40-50 21%
50-60 10%
60-70 7%
70-80 4%
80-90 2%
> 90 4%
(I was happy to find I am a member of the 1% group at the low end.  )
How different the interpretation of these numbers can be...
...depending on your viewpoint.
They look so hopeful. Their plan is so simple. And so simply wrong too.
They are pushing D supplementation to prevent breast and colon cancer.
They are asking everyone to supplement D until their 25-D is in the 40-60ng/mL range.
The results of high levels of D will appear in people years after the study is over...
((( sigh )))
p.s., On the topic of sun exposure's relation to 25-D levels... my husband is not on the MP but stopped supplementing with D at the same I did. He has Th1 symptoms. We eat mostly the same foods (but he occasionally eats canned tuna) & he is out in full sun while fishing for 1-2 days each week (fully covered & good sunscreen). His recent 25-D test result was 14ng/mL, down from over 35ng/mL two years ago.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Russ
Member in Phase 3
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Posted: Mon Sep 7th, 2009 10:20 |
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FYI, the link in the original post is returning a "web page cannot be found error". Here's an updated link that seems to work:
http://www.zrtlab.com/blood-spot-individual-tests/view-all-products.html
Also, I noticed that in addition to 25D, another blood prick test you can order from this lab is CRP. I believe that Dr. Marshall has said that CRP can be a useful marker as it is released with some of the anti-microbial peptides.
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Lyme, MCS | Phase 1: Jul '06 | Phase 2: Nov '06 | Phase 3: Jul '07
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