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Cynthia Schnitz
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| Joined: | Wed Apr 8th, 2009 |
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Posted: Sun Sep 6th, 2009 06:44 |
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| Well, at 10 months, my eye sensitivity to light is gone. I tried to go without NOIRs a month or 2 ago, and got word recall problems then, but not any more. I think I may be close enough to cured at 2 years for all intents and purposes, as I will be at max Phase 3 in a couple of weeks at about 11 months on MP, but of course, time will tell. I think it is sort of a Gaussian curve kind of thing. How far out on the Gaussian curve of less and less bacteria do you have to be to consider your self well? Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10ng/ml 10/10, (preMP 125D/25D=47/43) | My progress
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Joyful
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| Joined: | Sat Jun 9th, 2007 |
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Posted: Sun Sep 6th, 2009 08:39 |
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I think that's a good enough topic to have it's own thread.
So, here you go...
Length of MP
how will you choose your end point?
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shkull
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Posted: Tue Sep 8th, 2009 05:03 |
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| Hi everyone What I meant is sun sensitivity won’t go even after two years, atleast for average Joe who is quite sick, then why such confusing statements are still there in the FAQs.
We know to most of the MP vetran took more time to resolve their light sensitivity . Some members like Cynthia and Odette are quite lucky to have light sensitivity resolved quickly but very few like them are on protocol.
Patient won’t resume normal life again in two years time even if he is bit improved. He still has to live with the darkness and long way to go before complete remission. That might discourage some people around him.
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expate
Member
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Posted: Tue Sep 8th, 2009 05:24 |
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Hi, I'm very... um non scientific here. What I can say is that, I was well more photosensitive than I thought I would be (given my relative "dis"ease) but the photosensitivity has resolved within a reasonable amount of time... even given my relative lack of disease.
However, I do still find natural ligjt, ie. exposure to direct sunlight, difficult. On the other hand, I have not "pushed" it like I have ambient light indoors.
Working my way though it.... feel free to pm me for clarification...
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), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Tue Sep 8th, 2009 13:19 |
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I have not looked at the posts about light sensitivity in a long time. Initially the online trial was open to only those with sarcoidosis. Perhaps the posts more accurately reflected the affect on most sarc members at that time. Since then, the MP was opened up to just about all if not all chronic illness.
So if the complaint is that the posts are no longer accurate and are therefore misleading, I think that folk on CureMyTh1 try every now and then to remind people that you have to keep up with changes as they are posted. (Although I think the estimate sounds about right for indoor light sensitivity for most people.) No doubt the unwieldiness of the site provides the impetus for some members who are working to put a new information base together. That is, they are trying to create a vehicle that would be easier to update.
Hopefully when that new information base is in full swing, the language about light and sun sensitivity will demonstrate the full range of reactions.
Does anyone have any idea when that information base will be up and running and a direct link for folk (new and old to the MP alike) to access?
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Joyful
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| Joined: | Sat Jun 9th, 2007 |
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Posted: Wed Sep 9th, 2009 05:58 |
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Claire,
Anyone can review, and comment on the pages in development in the new MP knowledge base.
Here is a page on photosensitivity:
http://mpkb.mp-dev.com/doku.php/home:lifestyle:light:photosensitivity
If you have any observations about ways it could be updated/improved, feel free to post your editorial comments here in this thread and I can offer them for consideration.
Paul Albert has written many of the new articles in the KB. Some articles that have not yet been updated are simply a cut/paste from the FAQs and have not been reviewed for content.
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
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Posted: Wed Sep 9th, 2009 17:42 |
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Perhaps there is some confusion over what I said and asked.
My comments were about the way the site has been organized in the past, and my question was trying to get at whether there would be a direct link on the front MP page (or a replacement of the pages that exist now) with the new information base. And whether anyone knew when that direct access would be made easy for all. (The implication is that a direct link from the main page would make it a likely first stop.)
Thanks for all the hard work on the new information base (and to everyone who has gotten the MP site to the point where it is now... it is good to be at a growing pains time in the MP development... onward and upward). I am looking forward to being able to access it for answers to many of the questions that get asked.
Claire
P.S. Even a link on the main page indicating that the new information base is a work in progress would be helpful I think. If that exists, and I'm missing out (gotta love brain fog), please let me know.Last edited on Wed Sep 9th, 2009 17:44 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Joyful
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Posted: Thu Sep 10th, 2009 07:08 |
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Ah, I see where you were going now. ... I think ...  ... maybe I'm getting less photosensitive if I can't see as good through my good ol' NoIRs?
I'll pass along your excellent suggestion.
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Deb Grabetz
Support Team
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Posted: Thu Feb 25th, 2010 13:50 |
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My light sensitivity continues, sometimes better on some days and on others when I'm herxing, seems worse. Just out of curiosity one day I googled..."why do fluorescent lights bother me"....I read through a couple of peoples posts and imagine this...
One post read about his sensitivity to fluorescents and he noted "a few years back I had sarcoidosis"...I couldn't help but think, fella you still got it!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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patrickburke
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| Joined: | Mon Jul 12th, 2004 |
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Posted: Sun Mar 7th, 2010 01:29 |
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My light sensitivity was extreme and included non visible forms of light 
But it "only" lasted for about 26 months and started fading after about 20 months to eventually vanish over one weekend  . It has resurfaced a few times for very short periods (minutes) but has never been a problem worth mentioning.
Pat.
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Deb Grabetz
Support Team
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Posted: Sun Mar 7th, 2010 03:06 |
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Pat,
Good to get an idea of what others light sensitivity has been as a guide.
I am truly hoping that once I add a third abx, *wink* you know the one, that it will help with my neuro and include my light sensitivity. For me this started in 1990 when I first flared and did not know what was wrong. Many symptoms settled but the light sensitivity never went away. It has gotten much worse of course over the last couple of years, so I expect that it will take longer than I had imagined. Annoying though isn't it?? Just nice to now know what it IS!
I switch my NoIR %...as often as I change my clothes!!!!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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jsledge
Member
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Posted: Tue Mar 9th, 2010 19:41 |
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I'm on my 24th month, and the eye sensitivity is close to normal. In fact, on a cloudy day I can go outside, no glasses, and apparently suffer no repercussions. My skin sensitivity has been slower to resolve, and still has a bit to go. When I'm feeling good, I'll get out and run errands or work in the yard on more overcast days, covered up and with sunscreen of course. Now and then I'll overdo it and suffer for a day or two, but that's a far cry from the week to 12 days I'd suffer about 8 months ago.
As they say, it's a very individual thing, but I hope this helps.
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Sarcoidosis/lungs |HTN |Ph1Mar08 |NoIRs |covered up |low lux |25D 14 ng/mL |1,25 D 25 pg/mL | Chantix 10 mg bid
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
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Posted: Wed Mar 10th, 2010 03:03 |
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coming up to my 18 month anniversary
I noticed my eyes did not seem to be all that sensitive -- could not see as well through NoIRs so
stopped wearing at home computer, stopped wearing around house, sometimes did not wear while watching tv
Meanwhile I was having more trouble with leg cramps and even finger cramps, which had no relation to dose days or herx days, but came on within a day or two of my employment days
Doh
so my eyes feel less sensitive in themselves, but something in my brain is very out of whack in regulating endocrine and hormone activity.
Have learned the hard way I must keep wearing all 3 strenghth NoIRs as appropriate or suffer the consequences of sleepless nights and painful times of muscular cramp.
My conclusion:
there are two forms of light sensitivity, which makes for four individual situations (both, neither, or either)
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Deb Grabetz
Support Team
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Posted: Wed Mar 10th, 2010 13:05 |
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SallieQ you are so right. When we get less sensitive to light, we seem to get lax and forget about what is going on with the brain. I find that so often because with work, I am unable to wear my NoIR's...and I usually pay the day after. Of course it is far less than it was a year ago but it is still there.
There is a fine line at some point also because I notice I am bothered at different times with different strengths. Something to do with the healing process I'm sure...so I've learned to address each day with my NoIR's as my body demands. I'm always switching out strengths of lenses to find the right *feel*.
A very good reminder from you though that there is still much going on with our brains, even when we aren't sensing it!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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Posted: Wed Mar 10th, 2010 18:11 |
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Deb, I am with you. I could use a 65% and an 85% visibility for some indoor situations. If my mind says the NoIRs are too strong, I get symptoms as well. As it is, I have prescription glass that are lightly amber tinted for when I am indoors in places where the light is too bright. However, that doesn't help on a very cloudy day outside. I need NoIRs for that.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Wed Mar 10th, 2010 18:39 |
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Claire it is a nice place to be though isnt it? I remember the day when the 2% were a necessity at all times! I love progress! My room is still darkened and is a safe haven when I feel the need to rest and I believe I will leave it that way for the rest of my life. It is a very comfortable place to go...
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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Posted: Wed Mar 10th, 2010 19:15 |
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I feel the same about the bedroom except I will be putting up heavily tinted window film. One day I'd like to be able to remove the black out material and see out the window!
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Wed Mar 10th, 2010 19:45 |
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We have room darkening shades on all of our windows but your idea to put a film over that would be tolerable and yet be able to look out would be a nice option under my shades. We do have a lovely view of our downtown that I'm missing, especially in the winter with all the streetlights.
Nice idea!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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JanEE
Member
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Posted: Thu Mar 11th, 2010 19:08 |
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| Ahhh, the memory of that first glimpse of my yard---even through two layers of black plastic! It was spring, and finally I was able to pull up the shades under the plastic. A gorgeous red rhododendron was in full bloom right there in front of my eyes. What a sight. Even though my poor garden had/has gone to h--l in a handbasket, that sight is one I won't forget.
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Mar 11th, 2010 21:22 |
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My experience is that tinting on windows is not nearly enough attenuation of the light. Better to use your NoIRs to look through the windows by drawing back the blackout curtains...
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