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YoKoMo
Member in Phase 3
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Posted: Tue Jul 8th, 2008 02:32 |
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Hi all,
In this topic I would greatly appreciate if people on the MP for over a year could tell us first year people about their real-life experiences with light sensitivity. I can read endless progress reports of people feeling better, as I am  , but almost nothing about when they can again deal with light. The vague "eventually" or between 1-3 years is not really helping me for trying to make some best-guess career and family event planning, as well as some long-term plans for dealing with light. (If it is likely to last 3+ years, I'll make major changes to my career and my house.)
I'd just like people on the protocol for over a year to tell us their own personal experience with these things:
- What is your current sensitivity to light? (Eyes and skin)
- If it is less, when did it lessen and how much?
I'd especially like to hear from people on the protocol for 3-5 years--to hear how they are doing with light.
Thanks!
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08
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Dr Trevor Marshall
Research Team
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Posted: Tue Jul 8th, 2008 03:01 |
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To get some idea of the eventual end-point, take a look at the candid video from the UCLA conference on Aging. Yes, folks, those are ex-MPers sitting outside having lunch without dark glasses
http://www.vimeo.com/1293451
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JT
Member in Phase 3
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Posted: Tue Jul 8th, 2008 04:41 |
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I have been on the MP for three years, and I can detect no sensitivity to light at this point. I can be outdoors without sunglasses, and it's not uncomfortably bright, nor do I experience any adverse effects from it afterwards.
When I began the MP, I was very light sensitive. I wore 2% NoIRs outdoors at all times, had the windows of my home well-covered, and wore 10% NoIRS indoors at all times. After about a year and a half on the MP, my sensitivity began to gradually decrease to virtually zero, where it is today.
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CFS Ph1:6/05, Ph2:12/05, Ph3:7/06; 1,25D=34 (6/05); 25D=8 (6/08); Nature-Throid
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patrickburke
Advocate
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 395 |
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Posted: Tue Jul 8th, 2008 19:59 |
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Hi,
I have been on the MP for over 3 years. I used to be extremely sensitive to heat and light. The first 18 months were the worst, just a fraction of a second of light in my unprotected eyes has been known to make me almost pass out or suffer temporary loss of vision. I can also remember being dazzled by the tiny LED on my switched off TV on night in the dark whilst wearing Noirs. After those bad 18months I began to feel some steady lessening of my sensitivity taking place. Then one weekend at about 26 months it just vanished ..............and so far has never come back  I have not worn a pair of Noirs since that weekend . I do still cover up and I stay out of sun as much as I reasonably can when I can just for good measure.
For me nowadays light avoidance is more of a habit and a precaution than a necessity.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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YoKoMo
Member in Phase 3
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Posted: Tue Jul 8th, 2008 21:16 |
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Great input. I went to that link Barb and did find some information about when light sensitivities abate, though it is largely about how important it is to avoid light when you are sensitive. (Which I know all about!  )
Thanks for the feedback so far. Very encouraging.
Last edited on Tue Jul 8th, 2008 21:18 by YoKoMo
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08
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Joyful
Member in Phase 3
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 600 |
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Posted: Tue Jul 8th, 2008 21:40 |
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Hi KD, I'm barely a year into the MP but I can add my recent experience to your thread. 
In April I tapered off the MP antibiotics and then in May I stopped the Benicar as well. While I don't recommend doing what I did, and I believe the resulting inflammation set my vision improvements back a bit, I did experience a considerable lessening of light sensitivity. (But I needed to keep using the NoIRs in any kind of sunlight.)
So, while a number of people have a long period of complete light sensitivity, my experience has been some periods of very intense light sensitivity and other periods of lower light sensitivity.
Right now, after a month back on the full protocol, I do not need the NoIRs indoors or even much with fluorescent lighting, but I am much more comfortable in lower lux settings.
When my body is working really hard battling the bugs and cleaning up the aftermath, I find that going into a dark quiet bedroom to rest for a while is helpful, but this is nothing like how tremendously light sensitive I was 2-6 months into the protocol.
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 Ph2Feb08 Ph3Aug08 | NoIRs cover up but rarely leave low lux home | 25D15 Oct08 | ABC of MP
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Deb Grabetz
Advocate
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Posted: Wed Jul 9th, 2008 00:34 |
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Hi and great topic...
This is one year for me on MP, this month. In February of this year, I had been on MP for seven months when I noticed my indoor 10% NoIR's were becoming very bothersome...It seemed I just wanted to pull them off my face all the time. It took me a few days to figure out that maybe I was becoming less light sensitive indoors. So I decided to order the 40%. Sure enough that was my problem and this occurred right around the same time some of my vision returned in my "legally blind left eye". I found that very interesting.
Now at exactly a year on MP, I am finding myself less and less light sensitive and especially on cloudy days. I understand that we still encounter UV, etc on these cloudy days but I am definitely less bothered from experimenting with this. Sunny days, I do not even try any experimenting as I can feel the heat on my skin and the sun affecting me quickly. I do not even chance a run in on a bright sunny day. I love the feeling of being behind the 2% NoIRs...it is so calming to my body.
I wondered myself in early stages, if it would be easy to determine how things are progressing but it just seems to happen and we slowly become aware of the sensitivity changing for the better. For me, I have had light sensitivity since 1990 when I became ill with neuro symptoms that were not dx'd until last year. So I stayed away from malls, stores, the grocery. I worked under fluorescent lights five days a week and now know how much I struggled in that environment. So I am still very, very, light sensitive in these types of settings at this point, from artificial lighting and *smile* when I think of what it will be like to have this also resolved some day!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dody
Member in Phase 2
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Posted: Wed Jul 9th, 2008 04:21 |
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Hi YoKoMo,
I had extreme light sensitivity, from shortly after I got really sick a few months before beginning the MP, straight through my first year and 3 months on the protocol. A too-bright bit of light or reflected light would hit me like a sledgehammer, sometimes causing me sudden shortness of breath and near-blindness.
We did modify the house big-time. Closed off the sunroom that was part of why we bought this house. Stuck resin flooring paper or heavy vinyl shower curtain material or ultrasuede to several windows, double and triple-layered curtains on others, painted the white front door dark blue so we could let in a little air without much light, etc, etc. Closed ourselves off (bless my supportive partner's heart) from the views of woods and wildlife we love so much.
I also changed my workday routine so that I arrive in early morning and do not leave the building till late afternoon. Now that I am exercising a bit, most of it consists of walking laps in the basement at lunchtime.
I am an outdoors person who had very little of the outdoors last spring, summer and fall. Went to the beach only after dark. Took out the compost or did a little pruning only at dawn or dusk. I used to joke that I came out with the raccoons and possums. To this day I have to resist looking skyward when my partner points out an osprey or hawk or heron flying overhead.
However, today (after a year and 5 months on the MP), my sensitivity is only moderate. I continue to be cautious and cover up as much as I reasonably can when outside: black scarf, long dark sleeves and pants, big sun-proof hat with dark under-brim, leather gloves, dark gauntlets cut from dark socks (or else zinc oxide) on wrists, and zinc oxide on lower part of face.
But compared to last summer, I'm going easier on how many layers of dark cloth I put between me and daylight. I dare to be outside later after dawn and earlier in the evening than a year ago. And with a good canopy overhead, I can tolerate a weekend outdoors. I've even been camping.
My goal of resuming kayaking will not be realized this year, maybe next summer. Water, especially salt water which is what I love best, is a very bright environment. I'm looking for sun-resistant gear to hasten my tentative return to the water. Of course, at this stage of my recovery I would probably have a very tough time getting my stiff limbs out of a kayak after even an hour of paddling!
I allow myself 15 minutes or so under the discount awning we found and installed over our deck, in early morning or evening. I even managed 1/2 hour under it at noontime one day, in the darkest corner, and survived.
Not total freedom, to be sure, but way more light exposure than a year ago, when I only felt air on my skin at night.
I am cautious, not like last year when I physically recoiled from light (I loved rainy days and hated sunny ones), but out of the knowledge that light exposure can creep up on you and cause symptom flares that can slow down your progress.
Nevertheless, I doubt that any one person's experience can predict any other person's. There is a large range in light sensitivity among the MP cohort, and no dependable timetable. WHEN it may lift a bit for you is not something you can count on. THAT IT WILL LIFT SOMETIME is a pretty sure bet. Like everything else in this protocol, you will have to discover what works for you. Just remember that light can still cause adverse reactions even when the warning eye discomfort is not present.
Sorry for this long message, can't seem to be concise tonight.
I wish you the very best in your recovery,
Warmly, Dody
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Lyme arrhythmia Lithium Valium Tylenol Mucinex NoIRs low lux home lite exp r/t to work cover up outside Mod Ph2Jul07 Ph2Apr08 D25Feb08
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YoKoMo
Member in Phase 3
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Posted: Sat Jul 12th, 2008 22:04 |
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| Thanks for more input. I'm still hoping that a few more 3+ year veterans can weigh in on their experience with light. Last edited on Sat Jul 12th, 2008 22:05 by YoKoMo
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1045 |
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Posted: Sat Jul 12th, 2008 22:24 |
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I would just add, regarding my status with sun sensitivity, having been on the MP for more than 3 years, that I still do need the NoIRs at the computer and in bright light. I do occasionally take them off when in the shade for a little while when outside.
I also went through a period of reduced sun sensitivity and then became more sun sensitive again. So, I am currently sun sensitive, but with adequate zinc oxide protection (using Kabana sunscreen, sometimes more than one layer if I'm going to be outside longer than a couple hours or have more of my skin exposed), I can live a quite normal life and go on trips etc...
I even went swimming the other day for 1 1/2 hours with two coats of Kabana on. Erik from Kabana tells me that it will last longer if you air dry when you get out of the water and not use a towel to rub yourself dry. Not that I am recommending this amount of exposure, especially to people early in the MP or with serious levels of illness. Be very cautious is my advice, but in my case, I knew it was a safe experiment due to past, cautious experience and since I have been on the MP a long time.
I am doing experiments now with Kabana's zinc shower gel that is also used as a shampoo. It seems to allow me to go outside without a hat some and have no ill effects. Erik from Kabana says he is working on a zinc oxide conditioner, so that would be another layer for the hair. I find that without that protection, or a hat, I get symptomatic if my head gets significant sun (even in the car).
Joyce Waterhouse
PS I describe more about my experience in the addendum here:
Sunscreen Overview (Updated Feb. 24, 2008)
I would also add that just like with anything, one is probably better not using more than one needs. Safety issues are discussed in the above overview and ointment for baby rash allows 50% zinc oxide. But, if one coat of zinc oxide works fine for you for a given level of exposure, I would not use two coats unless you find you need it.
Last edited on Sun Jul 13th, 2008 01:13 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 375 |
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Posted: Tue Jul 15th, 2008 20:44 |
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Hi,
My 2 cents . I just passed the 3 year mark on the MP. When I first started, I was very very light sensitive. I used 10%s constantly indoors, watching TV and computer time. I wore 2%s outdoors. This light sensitivity was still that bad even after 1 year for me (I remember once at the 11 month (June 2006) mark, I drove 1 hour in bright sunlight and I had to use 10%s with 2% over them to handle the light :-). That started getting a bit better soon after a year. at that point I'd notice that I was constantly lifting the indoor glasses off my eyes to "see" something. At about 18 months I stopped using the indoor noirs at home and at work. I had an indoor office that I kept pretty dim and my home is appropriate for low light. I could use 10% Noirs outside for an hour or 2 with no noticable effects. That just kept getting "slowly" better. At this point, I never use noirs indoors (regardless of the amount of sunlight coming in or other light). I continue to use 2%s outdoors...but mostly because I like them in the bright sunlight. I can go without any glasses outside for an hour or so without problems (and that's all I've tried). I played golf in the bright sunlight (5.5 hours in 95-100 F) with 10% on 2 weeks ago without any side affects.
I'll never be without some kind of eye protection when outside in the bright sunshine, but I'm probably no more light sensitive at this point than when I started the MP (or at least not much more light sensitive).
Robert
____________________
Biopsy Sarcoidosis Feb,2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs/avoid light; 7/1/2005; Ben Q6H 7/12/05; July '05 (D125=44 & D25=28); Oct '05 (D125=25 & D25=26);Feb 06(D25=12); May '06 (d25=12);Feb '07(D1,25=20 & D25=8)
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YoKoMo
Member in Phase 3
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Posted: Tue Jul 15th, 2008 23:09 |
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Thanks Robert! Very encouraging news.
You mostly reported on light sensitivity to the eyes. How about to the skin--the need to cover up? That's the part that is really affecting many of my long term plans.
Thanks again for sticking around on the website and responding.
Kelly
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08
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Julia
Advocate
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Posted: Mon Jul 21st, 2008 21:46 |
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Hi Kelly,
I'm over four years on the MP, currently on Benicar only, and just back from two weeks' holiday in the sunny south-west of my beautiful country (Ireland)
I did what anyone sensible would do - used sunscreen when in direct sun for some time, sunglasses when it was bright, sunhat if in hot sun for a walk. The only extra precaution I took was to cover arms and legs, so it was only hands and face that were in the sun. I think I was being over-cautious, but I wasn't going to risk ruining my holiday with my old sunlight enemies, cramps and insomnia.
But I have to add that I was never terribly light-sensitive. I worked part-time all through the MP, teaching under fluorescents with no glasses. I did find that some antibiotic combinations made me more light sensitive than others, making it very hard to pinpoint improvements in light tolerance - sorry! It makes forward planning hard 
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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YoKoMo
Member in Phase 3
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Posted: Wed Jul 23rd, 2008 01:53 |
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Thanks Julia,
It's great to hear reports of people who are out of the wombat stage. I'm on month 8th of MP. I hope I will be less light sensitive by next summer. May of next year (2009) will be my 18th month. It will be a grand era when I can rejoin the world of light (albeit conservatively)--mostly to just go out and do stuff with my kids again.
Last edited on Wed Jul 23rd, 2008 01:54 by YoKoMo
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 375 |
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Posted: Thu Jul 24th, 2008 05:31 |
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Hi,
I've been on a trip for a week or so and just saw your update and question. I'm outside quite a bit obviously these days. I've stayed with long sleeve shirts, long pants (blue jeans mostly) and a hat when outdoors. I don't wear gloves, or mask my face, rather I use the zinc sunscreen on visible body parts when spending much time outdoors (for less than an hour, I don't bother these days). I do wear shorts and a t-shirt to work out at the gym and when I run early in the morning. I doubt if I change much in the future (even if I ever felt totally cured at some point). I would love to wear shorts and short sleeves to play golf (maybe someday) but I think I'm so conscious of the bad sun effects at this point, I'll stay with more coverings rather than less.
I've worn some of the items from http://www.sunprecautions.com/about_us.asp?pg=2
for outdoor activities. They work pretty well.
Take care,
Robert
____________________
Biopsy Sarcoidosis Feb,2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs/avoid light; 7/1/2005; Ben Q6H 7/12/05; July '05 (D125=44 & D25=28); Oct '05 (D125=25 & D25=26);Feb 06(D25=12); May '06 (d25=12);Feb '07(D1,25=20 & D25=8)
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Chris
Advocate
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Posted: Thu Jul 24th, 2008 20:13 |
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I'm just into my 4th year, and only this last week did I dare to drive to work without my full full face mask hat. It's a one hour drive to the east, which I try to do late enough that I don't get the morning sun in my face.
I did that Monday and Tuesday, and got away with it. Previously, the morning drive without a face mask would give me a very bad day, an long to boot as it took more than 8 hours to recover enough to drive home.
I was out and about for other reasons on the weekend, though no long stays in the sun. However, working in a non-air-conditioned apartment when it's 95F/35C outside meant I could only work in bursts and spent a lot of time recovering. It seems heat is more of a problem than light right now.
I do use a lot more zinc-oxide than the tooth-paste-amount that Knochen suggested. I suppose it could be paranoia, but I've spent my time feeling bad.
Chris
Last edited on Thu Jul 24th, 2008 20:19 by Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deb Grabetz
Advocate
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Posted: Sat Aug 2nd, 2008 14:14 |
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Recently it seems that my NoIR's are really bothering me. Even the 2% when I go outside. Would a more seasoned MP'er help me out here, please. I've been on MP now for 13 months. I feel like I cannot see as well and also I seem to get dizzy with them on, which is something I've never experienced. I always thought I would want to wear my 2% outside, even once healed but this has really been bothersome for me...Neuro herx or change in sensitivity??
Thanks ever so much! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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JanEE
Member in Phase 3
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Posted: Sun Aug 3rd, 2008 03:54 |
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I'm just into my fourth year on the MP. On all but the brightest of sunny days I have no sensitivity left, and then I think it's just the normal type of squinting that anyone would do in bright light. I still wear the NoIRs when I go out just to be safe, but not on cloudy days (I do know there is not supposed to be any difference, but feel I need them less on those days).
When I started I bought the 10% and 40% NoIRs. From the beginning they made me feel spacey and weird, and a couple times I felt like I was going to lose my lunch. I think it's the color that makes me feel like I'm on another planet.
They have made me feel dizzy at times, but comfortable as far as the amount of light I was getting---if that makes any sense. It never occured to me that maybe that meant they weren't dark enough, but when it came to seeing I always felt like I wanted to take them off. Even now I put them on to walk out to the mailbox and while I think they are protecting me, the color still makes me feel spacey and like I can't see well through them.
I didn't notice my sensitivity lessening until about the end of the first year. After another year later I began to cautiously take the plastic off the windows, one layer at a time. To start, I had a huge roll of extra large plastic bags and used them the way they came off the roll, which meant they were two-layered. On larger windows I cut them apart and put two on, one over the other. I also left the shades down before taping the plastic on. My occasional guests would tend to fall asleep because the house was so dark.
When I started lightening up the house I cut off one layer at a time, or even just half a layer, on windows that didn't have much light coming through. I still have plastic on a couple that receive light glare most of the time. I even covered the LED lights in my bedroom with one layer of black plastic and wrapped a layer of dark fabric around my lampshade---even though it only had a 15 watt bulb. I still tend to work in the kitchen by lamplight instead of the overhead floods. I turn those on mostly to check things in the oven.
Deb, this may not answer your question, but for myself I think it's just the nature of those glasses. I don't get, or ever did get, that sensation when I wear/wore very dark regular sunglasses.
Jan
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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
Research Team
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Posted: Sun Aug 3rd, 2008 10:07 |
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Deb,
I usually say that when you can't see through the indoor NoIRs, and start to trip over things, it is time to go to a lighter pair, or start brightening up the house a bit.
As you recover, your eyes do return to normal sensitivity over about 4 years, as Jan says, and you will get to the point where you can't drive at night with shades on, and you will have trouble navigating through the same house that used to be so bright, once upon a time...
Even after you recover normal light tolerance, it is best to continue to protect your eyes, but with less opaque lenses. No need to squint
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John McDonald
Administrator
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Posted: Sun Aug 3rd, 2008 18:52 |
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Going on year 3 now, light sensitivity is much, much better than the early days but it waxes and wanes even now. I am more light sensitive on days when I elicit a big collection of herxes.
The NOIRs are not good optically and identical models vary as to optical acuity. I really dislike using them for close up work and mostly only employ them for driving or walking out of doors. For me it isn't about the color filtering, it is about the plastic lensing with the ever so slightly varying thickness of plastic. But they are fantastic for blocking NIR, blue and UV and for what they do they are cheap and expendable. And I have expended quite a few so I like the cheap price and will tolerate the optical imperfections gladly.
Deb - sometimes my eyeballs have temporarily changed shape with herxing, or at least I think they have. It doesn't happen much now but I used to have days when I just couldn't see well and my eyeglass prescription was wrong because, I assume, I had swelling (IP) in my eyes. I could tell because it was a 48 hours type of thing.
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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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