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Kas
Member
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Posted: Fri Aug 15th, 2008 17:57 |
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Lately, I have noticed a big change in my indoor light sensitivity. I have been finding rooms way too dark, have been removing my Noirs for the computer - just cannot see with them on- and the TV and have been experiencing no light related IP's that I know of. I had black- out roller blinds installed in the rooms I frequent most often, and find that to see ( even without Noirs), I have to pull them up and rely on my vertical blinds only. I find myself putting the dimmer switches up at night to see better.
I do realise that this could all change with each uppage of the phase two abx, but for now, is it necessary for me to remain in the twilight zone indoors, or can I be more relaxed about light observance. My D levels ( both) are extremely low - 25D cannot be read, and even 1,25 D falls below the normal range, so I am not concerned about getting too much D right now from indoor light. Even flourescent lighting, which really used to worry me in stores etc, is no longer bothering me.
I must mention that I am still being really vigilant about diet, and outdoor light - I wear Kabana cream on exposed skin, hats, gloves and darkest Noirs during daytime hours. Even then, I have noticed that with my protection, I can now cope with far more light exposure than I coud before.
Does this mean that I can be more relaxed about light for the moment? Has anyone else noticed this improvement?
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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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expate
Member
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Posted: Thu Aug 21st, 2008 15:39 |
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That's really encouraging news. Unfortunately, I can't answer your questions about light.  But I figure I'll bump your question back up to the top with this ode-ette to my light meter. 
Meter de Lux
My handheld lux meter arrived yesterday by mail.
Purchased on a tip from Dr. M, I got it on sale.
Typhoon Fung-Wong in Taiwan delayed it in post,
But now that it’s here, I’ll share what I like most.
It gives to me the confidence I need
To wander all through the house without heed.
My meter de lux, whom I’ve named Luz-cinda,
Tells me when I need darker shades on the winda’.
I hold her in front of me and follow the glow,
Her digital display indicates where I can and can’t go.
She’s revealed the nuance of early morning light,
And taught me the same spot in afternoon is too bright.
So now that I’m confident I’m MP compliant,
I’ll not have to be quite so NoIR reliant.
 dette
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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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Kas
Member
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Posted: Thu Aug 21st, 2008 19:35 |
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| Brilliant!
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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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Julia
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Posted: Fri Aug 22nd, 2008 08:47 |
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h h h dette, you are a screeeam!
Kas, I would think you could relax the NoIRs indoors, and just watch out for daylight on your skin. If IP increases, you'll know to back-pedal!
Julia 
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expate
Member
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Posted: Fri Aug 22nd, 2008 12:48 |
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 dette
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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 |
| Posts: | 1396 |
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Posted: Mon Apr 6th, 2009 08:11 |
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I thought I'd bump this up there again.
Although I'm still using a 25watt bulb next to my chair and a 30watt bulb next to my bed, I can tolerate additional watts throughout the rest of the house. Like Kas, it is now better for me to use the computer without NoIRs.
However, while I don't know what sort of reaction my skin would have to the light, I am not taking any chances because I am still very sick and have not yet been able to move on to Phase 2.
This much I do know: my eyes are still incredibly sensitive to daylight and I cannot go out in the brightest light for more than about a 10 minute drive with 2% NoIRs over 10% NoIRs...and that is on a good IP day. I try to limit my outtings to the evening and cloudy days where possible.
I'd have to be feeling a whole lot better--and that would include my eyes not being sensitive to sunlight--before I'd trust my body being exposed to sunlight.
WHICH RAISES A QUESTION (cause I could be wrong about that):
I believe Doc Marshall has said that 1,25D (as related to sunlight exposure) is not a significant source of 25D (food/food supplementation is the primary source). Mostly, 1,25D causes unpleasant (or worse) reactions in the very sick. HAVE I GOT THOSE TWO POINTS RIGHT?
So here's the question: Am I right in thinking that sunlight sensitivity in the eyes ought to be a guideline for knowing when it might be safe to have sun exposure to the skin? Or is sunlight significantly harder on the eyes and will my skin likely be able to handle the sun before my eyes will?
The reason I think eyes getting better first is a good guide is that I don't remember having to wear sunglasses as a 12 year old, but it seems to me it was the sun on my skin that made me feel incredibly faint.
Perhaps it is an individual thing.
ClaireLast edited on Mon Apr 6th, 2009 08:11 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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Deb Grabetz
Moderator
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Posted: Mon Apr 6th, 2009 19:29 |
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Claire,
Perhaps as you say, it is an individual thing. I am still very uncomfortable when exposed to sun. Cloudy days for whatever reason are so much easier on my body and my IP. My first flight out early in the morning is usually dark from takeoff to landing. At this point, I go underground at the airport, like a mole to stay out of the sun but there exposed to fluorescent lighting, which in my case is the absolute worse. Within minutes I feel the IP coming on strong. Usually a 20mg of Benicar will settle me down. We will soon have a "dark room" available for naps that I have decided to spend more time in to give myself a break. This was my main reason for wanting to cut back on my hours as I knew I would be experiencing more IP with the summer months rolling around! Also, gives me more flexibility if I want to pick up night flights.
It seems from the experimenting that I've done that it is my eyes that are greatly affected. For when my IP starts rearing its ugly head and I put my NoIR's on I feel immediate and noticeable relief.
This post of yours reminds me though that I have cut back on my consistency of using sunscreen and may need to rethink this a little!
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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eClaire
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| Location: | Virginia USA |
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Posted: Wed Apr 8th, 2009 03:34 |
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Deb,
It is interesting that florescents are still bothering you so...there goes the individual thing. I actually walked around Walmart two weeks ago without any NoIRs on because I could not see with the 40%. (Though I did keep my hat on.)
Someone on the MP (I can't remember who right now) explained how some cheaper florescents cause greater problems. Also, I've found that some places like the local Costco use some other lights in addition to the florescents (I think they may be infra-red...holy mackeral, the emergency room of our local hospital uses infra-red), and I must not only keep my 10% NoIRs on in there but I must stay covered up entirely too. Just a few months back, though, I couldn't even shop in there.
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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Alayne
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| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Wed Apr 8th, 2009 07:07 |
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Claire, like Deb, I'm still very sensitive to fluorescent lighting. It's really the worst for me. This is after 3.5 years on the MP. However, as you mention, some stores are worse than others. For instance, K-Mart makes me want to pass out. Home Depot's okay with a hat and glasses, and I have to take my glasses off in Whole Foods. It really varies with the types or qualities of lights used.
I myself can use the computer quite often now without glasses. When IP's heavier, I definitely feel better with glasses. I also don't see as well at nighttime now with glasses and have to take them off quite often. I enjoy a higher light setting in my place as well so I can see things.
However, I still can't watch TV without glasses (40%), although for darker moments, have to lift the glasses. We have a flat screen TV which may be brighter than the older models.
At the movies, I often take my glasses off. Actually, usually.
Outside on the brighter days I used to wear the 98% + 10% NoIRs and thought I'd lose my eyes, but now am fine with the 98% alone.
Cloudy days, i'm often okay with the 40% NoIRs, unless it's the height of the day.
I wear long sleeves and pants, but the sun and heat don't seem to affect me much any longer (as long as I wear a hat). For some reason, exposed head space still affects me in a bad way. Or at least it did a six months ago when I tried it. My head hurt for days afterwards, so I haven't tried it since.
***
My DH, however, after over 3 years, still cannot view the computer w/o NoIRs w/o strong neuro reactions. He also definitely responds to fluorescent lighting in a seriously negative way.
The apt. is far darker than I would like it to be now (I can't read anything in there any longer), but he's still much more comfortable with that level.
That said, he can go outside without sunblock and does fine. Go figure. Take his glasses off and he's toast.
And make him wear long shirts in the heat? The heat affects him FAR more than the sun on bare skin.
***
I guess this shows how individual we are in our responses, eh?
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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Deb Grabetz
Moderator
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Posted: Wed Apr 8th, 2009 12:00 |
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Alayne,
Your description of eye related IP sounds like a footprint of my own! I'm curious what your history in the workplace is?? I worked under excessive fluorescent lighting, meaning a huge open space office with bright, cheap fluorescents for over 25 years. In addition, my office was a full glass curtainwall where the entire day sun streamed through. Thinking about this workplace environment, I was drowning in Vitamin D exposure. Although, I have to admit once we added computers into the mix in the late 80's things seemed to get even worse for me.
I understand that feeling of wanting to pass out when exposed to certain lighting environments. I've been through this sensation many times...the difference now is having found the MP, I finally know what is causing the sensation and what to do about it! It will be a celebratory day though when my light sensitivity disappears, it is so annoying. I notice on some days it is absent and I get so happy...as I believe this means there is a healing taking place!
My daughter began work after college in an office at a college and also on a computer 40 hours a week. She started complaining to me about visual symptoms and CNS symptoms, which correlate with so much I've read on site. We did an experiment as she consumes a lot of fish and I later found out was also taking fish oil supplements (ugh!). She has completely given up fish of any kind and tries to watch also her D intake---her symptoms have cleared up on their own. She like many though, likes to tread on thin ice and had a fish sandwich one day for a Lenten Friday...needless to say, her visual problems kicked in within minutes. She called me up in disbelief and said, "Mom you're going to want to choke me..." and of course, I agreed!!!
Our bodies "talk to us" and try to alert us when things are not quite right, but we must learn to listen. In the case of Vitamin D consumption, there are so many that need to wake up and listen to what their bodies are saying rather than listen to what the media "thinks" we want to hear!
____________________
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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| Joined: | Mon Sep 25th, 2006 |
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Posted: Wed Apr 8th, 2009 15:35 |
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Alayne, Wow, the experience just between you and Jacks really does show how individual our responses are, which underscores for me that I probably ought to wait until my eyes can tolerate outdoor light before I expose my skin since sunlight on my skin bothered before sunlight in my eyes did. I could be wrong about that, but like you with the hat, I'd rather learn from your hat experience than pay for the exposure! I can definitely WAIT!!!
Oh Deb, you raise such an interesting point about history with florescents!!!
I've known since I was young that florescents bothered me and so when I worked in settings where there were florescents, I turned them off (when I could like in my own office) and used incandescent. In my last job, me and the rest of my co-workers convinced our boss to not put in florescents when he was building the new company building. No one wanted them, and so there too, I managed to only be exposed to incandescent. The only time I was exposed to florescents is when I went shopping, and I rarely enjoyed shopping as a result.
So I think I've had less exposure than many who have had inside jobs.
And Deb, listening to your daughter's experience I shudder to think that I lived on tuna most of my adult life and eating a lot of salmon thinking I was doing a good thing for my body. Egads!!!
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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Cynthia Schnitz
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| Joined: | Wed Apr 8th, 2009 |
| Location: | Arizona USA |
| Posts: | 59 |
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Posted: Thu Apr 9th, 2009 05:48 |
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| Well, I suspect that light in the eyes and light on the skin are two very independent things. My light sensitivity has reduced considerably now at about 5 months on the MP. But I have been noticing that light on the skin appears to generate 25D for me. I just had the experience (4 days ago) of spending 9 hours in a greenhouse without Noirs and my hands exposed, so given the light reduction in a greenhouse, I probably got the equivalent 2 to 3 hours of sunlight. I have had no neuralgic problems, but my IP shut down for 2 to 3 days. Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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BARNEY
Moderator
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Posted: Sun Apr 12th, 2009 17:53 |
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Cynthia,
You have 5 mos into MP....if it were me...I would stay away from the light until I am at least into 18mos of MP. If you don't it can slow your recovery.
Those who went before you, learned to avoid the light as much as possible, in order to heal more effectively. We learn from other's experiences, also.
But...the choice is yours. 'Rules' (so to speak) are there for a reason...I don't like the light restriction either but someday I won't have to pay any attention to them.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Cynthia Schnitz
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Posted: Mon Apr 13th, 2009 16:19 |
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Thank you for your concern, but worry not. I have only moved up the light enough to be able to see in my den. I never, well, almost never, expose my eyes to the sunlit world without NOIRS. I know that you had a very tough time with light sensitivity, but I started from a very different point. I never got very sensitive, and it waxed and wained from the start, and mostly wained. I was one of those that had a history of light INsensitivity , hated sunglasses, and was always complaining about not enough light illumination of things. I am herxing every well, and am progressing much more rapidly than most, maybe 3 times as fast as many, so it should not be surprising that my light sensitivity is changing at 5 months. Everyone always says that people should start the protocol before they are so sick, so here I am, one of those, and you just have to recognize that we do exist, and will be different, but that yes, we all need to always start with the expectation of hard times and error on the side of caution.
To give an idea of sensitivity, I visited a friend and chatted for a couple of hours. I took off my glasses as the light was pretty low, lights off, all north windows and small. We sat on opposite sides of her table, with her back to a small greenhouse window with a view of her sunlit yard behind her in my sight the whole time, the kind of exposure I have never done before. Toward the end of the chat, I had trouble finding a word, or a substitute word for almost a minute. Sunflare of course, but that was all. No head ache, no neurological things at all. If I hadn't been talking, I would never have known about the sunflare. Can't tell if it affected my herxing, as this was on day 2 of my zith cycle where I don't have much IP. Anyway, I will be much more careful in the future. Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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expate
Member
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Posted: Sat Apr 18th, 2009 07:42 |
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It's just that "how do you know" bit that's so hard. For those of us (hmmm, Dave L and me) who weren't all that sick, and don't have huge IP, how do you know?
I've been needing more light to see, taking off my NoIR's indoors in low to medium light. But yesterday, I found myself able to be outside on an overcast day at 6:00 pm without any glasses. Now, I did keep my eyes trained downwards at the weeds in my garden. But I managed 15 minutes like that with no ill effects that I can tell.
I will be interested to get the results of a D level test when next due.
Oh, and I saw the true colors of the upholstery of the couch in one office on campus today. I never knew there was lavender in there. What kind of color is THAT for a university?
dette
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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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Cynthia Schnitz
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| Joined: | Wed Apr 8th, 2009 |
| Location: | Arizona USA |
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Posted: Sat Apr 18th, 2009 16:53 |
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Hi Odette. I just noticed that it is likely that my light sensitivity is getting a little more intense, but not greatly so, because I noticed the sensation of eye strain while working on my computer, so had to lower the screen brightness one notch, and yesterday, getting ready for a trip into Phoenix (2 hour drive), I was in my greenhouse on a cloudy day, plus shading on the GH, for about an hour, without my glasses on. Up shot of that was that I had a word finding problem an hour or so later while driving to Phoenix and talking up a storm with my rider. I had all the usual precautions on the trip, so I attribute the word problem with the earlier exposure, and indeed, it passed and did not recur further that day.
Well, here are my two symptoms that told me I was getting too much light. Been looking for others, but this is all I have so far. It is interesting to see that the light sensitivity varies, so that is a wake up call to me to keep an eye on it, and not to be too aggressive with the increase in exposure just yet. Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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Debz
Member
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Posted: Tue May 5th, 2009 22:18 |
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Hi Cynthia,
Welcome to phase 2! I had an increase from 20.1 to 25 D, when I returned home from hotel blackout curtains. Four months later I was down to 8.8 and it surprised me. I was so happy, because I knew my immune was going to be kicking in!
Happy Herxing,
Debbie
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Cynthia Schnitz
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Posted: Wed May 6th, 2009 00:59 |
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Hi Debbie. Well, can you feel the change? I was doing what I could to move the IP along with a little vigorous exercise, and long very hot showers and was thinking I was doing really well with this, only to find the real reason was that my 25D had dropped from 26 to 10 in 2.5 months.
On the eye sensitivity, I continue to get less sensitive, so I am working on putting up dark film on my windows to allow seeing the outside world again. Don't know how this is going to work out yet, but I am using the "Gila" brand platinum heat control stuff from the hardware store. I also plan to order the UV blocking sleeves for the fluorescent bulbs. Trying to have the least discomfort for others now that I think this will work.
Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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expate
Member
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Posted: Wed May 6th, 2009 02:46 |
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Last edited on Wed May 6th, 2009 02:47 by expate
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Wed May 6th, 2009 03:22 |
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I've been needing more light to see, taking off my NoIR's indoors in low to medium light.
Odette,
I usually say that 18 months is the point where the folk who are not severely ill start to lose photosensitivity. So you are a little ahead of the curve. Enjoy it!
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