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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Aug 3rd, 2008 21:51 |
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John, there is an old document I put together in 2002 describing the Zeiss lenses I used during the 1990's which may give you some pointers to quality lenses which work  They can be ordered during your next trip to Europe
http://sarcinfo.com/zeiss.htm
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John McDonald
Foundation Director
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Posted: Sun Aug 3rd, 2008 22:17 |
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Trevor, I recall that you did it right, with good expensive glass lenses. When I started out I didn't imagine that I would be light sensitive for 3 years and in truth I haven't been. In my case the part that made it hard to work was less than 4 months or so. Now on all but a very few days I can get by by working in a dimly lit room with my LCD turned to minimum brightness. Sometimes I have to turn up the LCD briefly to inspect some colors. There are still just a few days now and again when even the lowest LCD brightness will exhaust me after 6 hours or so. But by and large I think the NOIRs are a brilliant solution. I tend to break, scratch or lose about 2 per year but the price isn't too bad and the new pair is so beautifully scratch free.
Off topic a bit - but I am working on a seminar I will give in November. This plot here shows the spectral eye response of each of the 3 human cones. The overlap between the red and green cones makes one wonder how we can distinguish those colors at all. Evidently some time ago in evolution some extra red or the green cones were shifted ever so slightly in spectral response. When evolution coupled that modest shift to a magnificent image processing brain we get this sensation of glorious colors. But it makes you wonder what our color perception might be like a few hundred thousand years into the future if our red and green cones were just a little more separated. The body is just amazing.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | On Vacation |
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Posted: Sun Aug 3rd, 2008 22:23 |
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Thanks for the comments John. Especially about the optical quality changing between identical models. The same is true for identical shading. I purchased some larger 2% NoIR fitovers and they do not block as much light as the wrap-around pair I already own. It's not just the way they fit. I have held them both up to a light and can see the new fitovers allow more light through. But as you said, who can really complain considering the price!
As for the shape of the eye changing... it's true. I had two eye exams two weeks apart because my vision became so bad while on my month break from the protocol in May (inflammation, I'm sure).
When I explained to the optometrist that the vision was worse due to inflammation, he asked me to come back in two weeks (after I was back on the Benicar for about three weeks) to recheck. I even used frequent Minocycline/Benicar the day before the exam to be sure I had minimal inflammation.
Here are the numbers:
Exam #1: distance -1.25, reading: +2.00 [on 04Jun08]
Exam #2: distance -0.75, reading: +1.75 [on 18Jun08]
In passing I asked him about a vision improvement technique called the "Bates Method" ... he said it was a relaxation technique that might be helpful to me. It's interesting to think that my level of relaxation (or non-relaxation) can affect the quality of my vision as well.
Last edited on Sun Aug 3rd, 2008 22:30 by Joyful
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Aug 3rd, 2008 23:20 |
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Those wanting a little more background in the color perception that John is talking about might like to read this article:
http://johncompton.pluggedin.kodak.com/default.asp?item=624876
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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
| Location: | Alberta Canada |
| Posts: | 155 |
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Posted: Thu Aug 7th, 2008 19:47 |
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I've been on the MP just over a year, and I'm definitely less light sensitive now than I was when I started.
Initially, when we began to lower our D and darken our house, I became quite light sensitive, and it worsened when I began Benicar. I was wearing my 10% NoIRs in the house and my 2% outdoors were not strong enough on really bright days. For a brief time I even needed to layer two pairs of 2% over each other (thankfully, that level of sensitivity didn't last more than a few weeks).
After about a month, we had darkened our house enough that I no longer needed the 10% NoIRs indoors, and haven't needed them at all for watching TV or being on the computer (our screen brightnesses are turned all the way down, though).
At some point over last winter, the 2% NoIRs became way too dark for me to wear outdoors, so I switched to the 10% for outdoor use and that's what I'm still using.
My eyes fluctuate in sensitivity depending on how well I'm doing. Some days I'm alright with a brief bit of sunlight in unprotected eyes, other days it's like a dagger being thrust straight into my brain.
And I find that there's a huge difference between sunlight and artificial light. Even if the artificial light appears brighter than the day's sunlight, sunlight is always harder on my eyes. I will pull a dark curtain closed, and then turn on a light switch to work in the kitchen. Something that energy conservationalists would plotz at, I'm sure.  But the overhead light is just so much more soothing to my eyes, I can't afford not to do things that way.
I do find that I'm still sensitive to my skin being exposed to too much sunlight. I wear long dark pants, a dark long-sleeved shirt over a t-shirt, a big sunhat, and use K cream and zinc oxide on my exposed skin whenever I'm going outside. As long as I have all of those precautions in place, I'm able to be outside for an hour or more without trouble.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Elisabeth
Health Professional
| Joined: | Tue Feb 12th, 2008 |
| Location: | Missouri USA |
| Posts: | 127 |
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Posted: Sat Aug 9th, 2008 00:31 |
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Kelly,
I'm on the MP w/ kids also and 5 mos into it. I'm SO GLAD you started this topic as I've been pondering it myself for awhile and trying to encourage my family (and self) that " . . . THIS TOO SHALL PASS . . . .", but of course the question in all of our minds is "WHEN???"....
So, thanks & best w/ your planning!!
A.A.R.T.S.T.A. (Anxiously awaiting return to "sunnier times" also),
Elisabeth 
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CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
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Cocoa
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Posted: Sat Aug 9th, 2008 08:16 |
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Hi All,
Thanks for this very helpful thread. I have been on MP for approx 1 year. In the initial stages my eyes were very light sensitive. I've generally had to wear 2% or 10% wraparounds over 2% Noirs outdoors!
Ok, but what about progress? Well, I now no longer need to wear 10% to drive at night and wear the 40% instead. On cloudy days I only need the 2% outside. On brighter days I still need the fitovers over the wraparounds. Light sensitivity is easing overall though and sometimes I can take them off entirely in dim nighttime settings.
I believe that my skin is a lot less light sensitive than my eyes after some inadvertent experimentation (forgetting to put on cream, etc).
Can members please share more of their experiences about reduction in light sensitivty of the skin as I dearly look forward to the day when I can be more relaxed about covering all parts of my body when going outdoors!
I look forward to hearing from you... best, Cocoa
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CFS, POTS, rickettsia, tachycardia, 125D46, MP 8/07, ModPh211/07, florinef for BP, Lamictal, clonazepam, melatonin, NoIRs, limited outings covered up, low lux home, 25D12 Sept 07
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John McDonald
Foundation Director
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Posted: Sat Aug 9th, 2008 19:47 |
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| Cocoa, my own skin seemed to become less sensitive within a few months of starting MP. I don't parade around in short sleeves and shorts to test it but neither do I cover from toes to chin anymore. I am pushing close to 3 years on MP now. My primary or my limiting herx these days is various changing neuro herxing but it includes a couple of a few days each week when I am remarkably intolerant of light on my eyes compared to the last 2 years. So in my case the light sensitivity waxes and wanes in mysterious cycles, but generally gets better. In general my herxes start out being broad and become episodic and then the episodes separate in time and go away. Likewise my improvements start out episodic and eventually these become more frequent and merge, and then I own the improvement. It is all counter-intuitive and strange, but after nearly three years it seems to work this way. Your trajectory will be similar and also different than everyone else's. But you too and your family will likely see this sort of improvement.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Cocoa
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Posted: Sun Aug 10th, 2008 01:48 |
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Hi John,
Thanks very much for your respone. My light sensitivity on MP peaked about 2 or so months into it. I had to wear 2%fitovers over 2% wrapovers or I would cop a shocking headache and very sore eyes. I'm not sure what will happen this summer season when I have to step outdoors. I have also covered skin very diligently on the few outdoor outings I make.
However, once or twice, I have forgotten to zinc hands or neck and have in retrospect noticed no difference. I think for me that light on the eyes can seriously increase discomfort and exacerbate symptoms.
Yes, I too am finding that for the first few months it was all one big continuous Herx merged together. Now I seem to get spaces (although generally short-lived) between the Herxes which I hope is a sign of things to come.
Best regards, Cocoa
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CFS, POTS, rickettsia, tachycardia, 125D46, MP 8/07, ModPh211/07, florinef for BP, Lamictal, clonazepam, melatonin, NoIRs, limited outings covered up, low lux home, 25D12 Sept 07
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HeatherK
Member
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Posted: Fri Aug 6th, 2010 12:00 |
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I too am wondering if any more members can share about when their skin light sensitivity lifted?
I am almost 3 yrs on MP and if out more than an hour in early evening light I get a 3 day later reaction, increased IP, intolerable pain. I am at this time ordering leather for a jacket . Have used a heavy cotton one until now.
I also am trying to get an idea of time involved as when eye sensitivity lifts and then when skin sensitivity lifts...
in summer in Canada
Heather
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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Deb Grabetz
Moderator
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Posted: Fri Aug 6th, 2010 14:14 |
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Heather,
I have noticed this summer that my skin sensitivity to the sun is much better as compared to a year ago. I just hit my three year mark on the MP. I avoid spending time out in the sun but now able to walk from my car to the store or water my flowers, things like that without getting beat up.
Cloudy days I can be out all day and doesn't seem to have any effect on me, even though we know that there are UV rays also during this time.
Eye sensitivity is another thing! My eyes are still very sensitive to light and especially fluorescent. I'm guessing that a couple more years will lessen this or so I hope. As you know it is very bothersome! Although my vision in my left eye is so improved as I had lost almost total vision in that eye when I was sick 20 years ago. We may learn a lot about blindness from the MP!
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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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Knochen
Moderator
| Joined: | Thu Feb 23rd, 2006 |
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Posted: Fri Aug 6th, 2010 15:54 |
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I passed the 4 year mark back in May and I'm now able to be at work without Noirs, but I still have them around in case I'm getting light flare symptoms. If it's a really sunny day and the office is bright, or I have to sit in a meeting room with lots of sunlight, it can still trigger a flare, but not as severe as it used to be. I started trying to go without in the office at about the 3 year mark and it took at least 2 weeks to re-equilibrate, and even then I was getting some light effect.
I still wear my 2% outdoors, but haven't needed the 10% fitovers in addition for a long long time. I don't seem to be sensitive to light on my skin (my D stays under 4 generally too), but I still take measures like the black long undershirt and long sleeves over and a hat. Fingerless gloves for driving. It's a big improvement from the light tight jacket, scarf, full gloves and sunscreen of the early days!
I do notice that my light sensitivity seems to bump back up if I'm having a lot of IP. Stage 5 has been interesting in that regard.  Finally starting to settle, so maybe I'm in the home stretch. But I've thought that before and been brought up short and hard.
Last edited on Sun Aug 8th, 2010 01:53 by Knochen
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Deb Grabetz
Moderator
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Posted: Fri Aug 6th, 2010 20:40 |
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Thank you Knochen, I forget to mention the NoIRs! I wear the 40% with my reading glasses for computer work. Around the house do not need with daylight coming into the house, unless I'm having some sensitivity, might throw on to relieve.
Outdoors I still wear darker NoIRs...I believe they are 10%??
My bedroom is the only dark room in the house and the only room that has air conditioning. So on sunny days I will often spend the day there watching tv or reading to give my body the "light rest" it seems to need. For sure too much light can still cause neuro problems for me but nothing like I've dealt with in the past!
Last edited on Fri Aug 6th, 2010 20:45 by Deb Grabetz
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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
Moderator
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 401 |
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Posted: Tue Aug 10th, 2010 21:46 |
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Hi,
I'm in my sixth year of the MP and looking back I had extreme light sensitivity for over two years. I couldn't bear even being near anything hot like a kettle or even a dimmed TV on my ankles at night in the dark. Even the LED on my electric toothbrush used to blind me. No amount of "fighting it" could stop me becoming as weak as a kitten when I was exposed to light..........it was so real but almost unbelievable! even to me.
Things did change and last year I holidayed in Turkey and endured temperatures of up to 53 C (127 F) in the shade without too much trouble. In the UK I have zero light sensitivity. And I dare anyone to stand the Turkish sun I had last year without feeling it even the locals were staying indoors!
It does go away! Honest lol
PS It was time for a new avatar that one was out of date by over 3 years
Last edited on Tue Aug 10th, 2010 21:59 by patrickburke
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Deb Grabetz
Moderator
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Posted: Wed Aug 11th, 2010 00:48 |
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| Oh Patrick now that's the kind of encouragement we all need to hear!!!!
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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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HeatherK
Member
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Posted: Wed Aug 11th, 2010 02:15 |
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Thanks All , you are all encouraging !
I was to town tonight at sunset with my husband, shopped for a bit and decided to drive home in the dark, only 10 miles , used no Noirs, some oncoming traffic but was pleased that I managed fine, just a slight headache . MUCH improvement from 6 months ago. I also tore off the black-out fabric off another window today and hung 2 layers of dark fabric, the top one can be pulled back to allow more light in. Still experimenting ! I am starting to feel that I am getting to the end of the tunnel finally... So Thankful for the MP!
Heather
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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John McDonald
Foundation Director
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Posted: Wed Aug 11th, 2010 04:10 |
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| I see that I last posted on this thread 2 years ago. I am far, far less light sensitive than I used to be. I can indeed parade around in shorts and short sleeves if I want now, maybe for as long as a year now. But not just every day. Earlier this year I added some minocycline and evoked some eye light sensitivity that was pretty annoying. But overall I enjoy much more freedom to go out in the light. It does get better, but if I am an example there will be hitches.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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