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The Marshall Protocol Study Site > MEMBER DISCUSSION > Public Questions and Discussion > Experiences with Photosensitivity, sunscreens and sun exposure


Experiences with Photosensitivity, sunscreens and sun exposure
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jcwat101
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 Posted: Sun Apr 11th, 2010 17:48

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This thread is going to discuss various people’s experiences with photosensitivity and protecting oneself with zinc oxide based sunscreens and other methods. It also will discuss people’s experiences with eventually getting to the point where one doesn’t need the sunscreen or other sun protection for normal activity. I will make a couple of posts and then others can share their experiences. Here are links in the KB on this

http://mpkb.org/home/lifestyle/light

http://mpkb.org/home/lifestyle/light/skin_protection

 – within the second, you can link to my sunscreen overview for further background.

So, really, one should first read/review the above links to gain a background on this, as I don’t want to repeat all of that here.


As a preface, I would add that it is really preferable to not need to use zinc oxide if one can and to become independent of it and other sunscreens when possible.  There might be hidden risks/drawbacks.  I do discuss research on safety in the sunscreen overview (http://tinyurl.com/ca76l6), but Trevor suspects that the studies don't tell the whole story.


The amount of vitamin D produced in various circumstances


When sitting in the shade one produces almost the same amount of vitamin D as in the sun. It takes very little -- only 20-40 minutes of outdoor light to unprotected skin to get the full amount that it is possible to produce for that area of skin for the entire day.
 
So, for most people, it is the amount of skin exposed and the length of exposure that are important, not the intensity of the light or whether it is cloudy or shady etc...  And without sunscreen, it is the first 20 minutes that is crucial.  Even a few minutes of exposure to light (wearing shorts and short sleeves in the shade, for example), could produce a lot of vitamin D -- much more than having one's face exposed to bright sun all day.

Photosensitive people on the MP often find that UVA light (the wavelength of light that comes through a window or when outside near twilight or at high latitudes in winter) can produce almost as much reaction as bright sun in the middle of the day (UVB light). I've done tests recently on this to verify it for myself.  Some contest the effect of light near twilight or through a window, saying only UVB light (not present under those circumstances) can produce vitamin D, but I think MPers experience show that at least for Th1 patients, the restriction to UVB light as a source of vitamin D is not true. 

The full amount of vitamin D one can produce in a day has been estimated to be about 10,000 IU if not wearing any clothing and as I said before, it only takes 20 minutes to do this. I estimate I get about 400 IU from my hands alone being exposed for 20 min. or more. Another 400-600 IUs would be the approximate amount from having my face and neck exposed to the light. (Note:  This may be wrong -- but it is my opinion based on my experiences).

I have been able to sunbathe and even swim when photosensitive for brief periods, but I have worn one layer of Kabana zinc oxide sunscreen (25%) for every hour that I think I will be outside.  This is because with this large an area of skin exposed, the amount of vitamin D produced could be quite high.

I also am careful not to wash off the zinc oxide. If one swims, one can air dry rather than towel dry, to reduce the tendency to rub off the zinc oxide.  Even with this, some light will get through, but these measures seem to keep it low enough for me to handle.

No one who is very photosensitive or very ill should try the sunbathing even for brief periods. These people should be very careful and work up to any light exposure they want to try very gradually. Also, keep in mind that you may be affected as much or more from light to the eyes, so one has to be careful. And some may be affected a lot by heat as well.  Even if you are not very ill or very photosensitive it would be prudent to only increase gradually and carefully, as you might be surprised at how much it affects you.  See my next post about gradually trying increased light.

I mostly have used Kabana green screen (25% zinc) when I can put it on my face the night before and Glycolix (17% zinc oxide) when I need to put something on my face the same day I will be seen (less greasy and almost as much zinc, but some chemicals that I prefer to avoid – see sunscreen overview ).

I am mainly focusing on what produces the most vitamin D in the skin.  Those with different sorts of photosensitivity reactions may notice a difference in reaction depending on the intensity of the light (e.g., when photosensitivity is mainly due to the eyes, or when one is actually more heat sensitive).


Protecting the head


Most of the time I have worn a hat for outdoor light protection, but I have also used Kabana Shower gel. I used to wash my hair with it and found it protected my head so I could sometimes go for brief periods without a hat.

Without a hat and without the shower gel, I reacted to having my head exposed to light just as it light had been hitting any other part of my body. The hair did not protect me.

I find I don't need a conditioner with the Kabana shower gel. Don’t worry if it feels greasy when you are using it, because it won’t afterwards. The shower gel may protect the body some too but I don’t know how much. It may not be good to use a conditioner after the Kabana shower gel because you might rinse the zinc oxide out.  

 

Sun Protection Factor (SPF)

As far as SPF, I find one can’t go by what it says on the label for sunscreens that include chemical sunscreen agents, since the chemical sunscreens do not seem to contribute significantly to blocking vitamin D production or preventing sun sensitivity reactions (except for Helioplex).

However, if it only contains zinc or titanium as a sunscreen, the SPF is useful. An SPF or sun protection factor of 20 means that it takes 20 times as long to get a burn as without protection.  My own experience is that this can give a sense of the amount of vitamin D production. Judging by the sunscreen with the highest zinc oxide (SPF of 20 for the 25% zinc oxide Kabana sunscreen) using the SPF, one can calculate just how long one can be out before much vitamin D is produced.

If it takes 20 minutes to get the full amount of vitamin D produced in a given area of skin, it will take 20 times 20 minutes (400 min or 6 ¾ hours) to get the full amount of vitamin D one can produce when one is wearing the sunscreen. Thus, in 6 ¾ hours of being outside (or near a window or in a car) with Kabana sunscreen one will produce just as much vitamin D as if one did not wear any sunscreen (e.g., for the hands, probably about 400 IU, or for hands and face, probably about 800-1000 IU and more if no hat). If one is out 3 hours, then one will produce half the amount of vitamin D (e.g. 200 IU for the hands). Any other sunscreen, with a lower % of zinc will be less effective and result in more vitamin D production.

So, in essence, if one is going to be outside a long time, the sunscreen becomes ineffective (or only effective for skin cancer protection). My experience is that one can get around this by wearing more than one layer of sunscreen.

 

How to deal with photosensitivity if one needs to be outside all day in a warm climate


A high % zinc oxide can help, but one has to wear enough of it for the amount of time one is outdoors. To really block light, it may take as much as a layer of 25% zinc oxide for every 2 or 3 hours you are outside. But this may not be practical for everyone. It is also something that may not be good to do very often. I know of no risk, but on the other hand, it is possible there might be (they allow 25% zinc in sunscreens and 50% in diaper rash, but the sunscreens do not warn one about any problems with multiple layers).

I think I wore about 4 layers when I was in Portugal since I knew I might get sun more than 6 hours per day. I had no negative effects other than needing extra moisturizer (the zinc is somewhat drying to the skin). I did have a layer of zinc oxide under my shirt, since is was not very thick. In my experience, the zinc oxide lasts until it is washed off.


Joyce Waterhouse





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jcwat101
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 Posted: Mon Apr 12th, 2010 02:42

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The following describes how I very gradually increased my light exposure and now do not need sun protection for my face, neck, hands and head.

Note:
Probably many photosensitive people will be at a point too early in the MP, when this is not a good idea. Extra light, for these people is unlikely to be generating IP. Instead, it is probably only throwing off their hormones etc… and not really accomplishing anything but producing symptoms. I think that the presence of an immediate reaction (within the first few hours) may be an indicator that the reaction is a useless one (see below for more), but this is speculative at present.

First, it is important to read the KB articles on this and my previous post on this for background. I should also mention that what I discuss here about my recent experience probably only applies to people late in the KB. I experienced a change in sensitivity from immediate short term reactions of increased pulse to later, more delayed reactions that were identical to IP (described in appendix from sunscreen overview, below --see link in http://mpkb.org/home/lifestyle/light/skin_protection )

<<Addendum (Feb. 24, 2008)

Joyce Waterhouse

Some people find that the nature of their sun reaction may change over time. It is important to take this into consideration if you are not progressing adequately, if you are having excessive symptoms or if you have a more serious and long-standing medical condition. Here I give an example of how my own reaction has changed over time. There appears to be a wide variety of responses, so your reactions may differ.

I used to have immediate reactions starting in just a few minutes, including fatigue, weakness, an increase in heart rate and a shaky feeling. And I recovered within a few hours. Now, in contrast, my reaction to natural light exposure (even on a very cloudy day) starts about 24 to 30 hours after exposure, peaks at 48 to 72 hours, and lasts almost 7 days after the exposure and the reaction more closely resembles my typical immunopathology symptoms.
This delayed effect, of course, can make it much harder to figure out. For me, it took avoidance of natural light/sun for a while and then a brief re exposure (just 5 to 10 minutes) to reveal the role the sun was playing in my symptoms.

I also now find I notice a much more protective effect from a higher percentage zinc oxide, like Kabana's sunscreen (20%) than lower percentages (like many with 3-10% zinc oxide), and much less effect from other types of products discussed here (Helioplex and Ketoconazole). In fact, I do not find the ketoconazole protecting me at all from the type of reaction I have now. This is despite that fact that it used to protect me from the reactions I used to have.

So, if you think you are no longer having sun reactions, but are having a difficult time with symptoms or your progress, it may help to try to reduce your sun exposure and use a higher percentage zinc oxide sunscreen when you do have to go out to see if that helps your situation over time.

I should emphasize, though, that even the highest percentage zinc oxide sunscreen lets some solar radiation through and this can cause vitamin D production and symptoms. This will be especially significant if a larger area of skin is exposed or the exposure is longer. This is true even if in a car, the shade or in cloudy weather. It should be remembered that one can still get sunburned with sunscreen on even if it is a powerful sunscreen, if you are out long enough. The SPF factor really only means that it takes longer to get to that point than without the sunscreen.

So, avoidance of daytime natural light/sun exposure and, when you have to go out, the use of dark, tightly-woven clothing, hat and gloves, are by far the most protective approaches. Even the strongest sunscreen should not be considered as allowing adequate protection for many of the more sensitive people, but is something some people find helpful, particularly for brief exposures for areas like the face and when other options are unavailable.

Sunscreen use should not be seen as a replacement for sun avoidance measures, but only as a tool that sometimes helps when used in conjunction with sun avoidance measures.

Particularly for people with more serious conditions, I urge extra caution with regard to natural light/sun exposure -- for a few of the most sensitive, even 5 minutes or less of natural light may cause a significant reaction.

>>


So, with this as a background, I now have the type of light reaction that is, in my opinion, due to IP from increased 1,25-D activation of my vitamin D receptors (the switch in response about 3 years into the MP, but this will probably vary widely among people and may coincide with Stage 5 -- http://mpkb.org/home/mp/stages ).

So, with the above in mind, it seemed best to increase my light exposure at times when my IP is fairly low and I can tolerate an increase. I was taking antibiotics (DMC) but at a level that was not giving me much IP.

I had been keeping my curtains closed and wearing Kabana sunscreen (25% zinc oxide) on my face, neck and hands. For my hands I had to reapply it every time I washed them if I was going to be getting outdoor light.

I began to increase light by not wearing sunscreen on my hands one day per week and going out 20 minutes or more on that day (for others, it might be better to start with 5 or 10 minutes). For me, that was like adding 400 IU vitamin D to my system and caused some increased IP that began a day later and stayed all week. The next week, I didn’t wear sunscreen on my hands for 2 days and each week I increased it by one day.

After getting to the point that I didn’t need sunscreen on my hands, I started increasing the amount of time I spent near a window with the curtain open. Over several months, I got to the point that I could keep my curtains open all day and did not need to protect my head, hands or face. My body had adjusted to that level of light. Going outside did not make any difference at that point because my body was apparently already used to the light through the window.

If I had done it all at once, the extra IP would have been too much. In my case, I had experience with chlorogenic acid reducing the IP (see other thread on chlorogenic acid and other strategies for reducing IP at http://www.marshallprotocol.com/forum11/13724.html), so I did have a backup strategy in case the extra VDR activation generated too much IP. Others have used frequent Benicar to help with light-induced symptoms that were too intense. It is always best to be cautious and do things gradually. And it is good to be familiar with what works for you in controlling reactions from light exposures.

In my case, the delayed reaction may be a sign that it is IP due to the length of time it takes for one of the conversion steps for vitamin D production in the skin. This link http://www.sciencemag.org/cgi/content/short/210/4466/203 talks about how the entire conversion is complete only after 3 days due to the heat dependent isomerization of previtamin D3 to vitamin D3. This is consistent with what I find, in that although the reaction begins to be noticeable about 24-30 hours later, it doesn’t peak until 2 or 3 days later. I do recall someone telling me that their reaction started sooner, but he was in a much hotter climate and so perhaps that could explain the reaction starting 10 to 12 hours later instead of 24 hours.

The fact that the increase in IP lasts about 6 days if I don’t consume chlorogenic acid is consistent with the length of time I understand the 1,25-D to stay in the receptors once it is there.

I think it is also a sign the symptom increase is due to IP in that once my body has acclimated to the level of light exposure I am getting, I no longer get a noticeable reaction from light as long as it is at that same level. It is as if my body is generating a certain level of IP with this level of VDR activation.

Although I don’t react to my baseline level of light exposure now, if I suddenly expose my unprotected arms to light, I do get a reaction the next day. I believe this is due to additional 1,25-D increasing the dose of my antimicrobial peptides to a new high and thus killing bacteria and giving me IP. So, in one sense, I am not photosensitive (i.e., my usual level of light produces no symptom change), but in another sense I still am (if I increase the area of skin exposed), I will react the following days).

Much of this is still speculative and like I said, this is a place to share experiences and see what others are finding as well. I’m just getting things started by sharing what I have observed in my own case and I’m not saying what will occur for others.  Some may find that what I did works for them if they are at a similar stage as I am, others will probably not.


One factor in my case that may make it different from some others is that I have very low 25-D (not detectable) and don’t consume much chlorogenic acid in general (only to modulate IP in certain circumstances). It will be interesting to see what patterns emerge as others share their experiences.

Joyce Waterhouse

 



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 Posted: Mon Apr 12th, 2010 14:13

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Hi Joyce,

I started the MP at the end of Sept so haven't had to deal with too much sun until now. I read your articles and decided on the zinc oxide sunscreen, however when I went to get some I couldn't find any, so I ended up with Neutrogena SPF 55 with helioplex. But it is so perfumey! Ugh! I usually get unscented products. Anyway, the smell bugs me less than the light sensitivity so I will use it for now.

I haven't had a  lot of trouble with light sensitivity, but it is getting worse. I guess my vitamin D levels are getting lower (the tests take about 2 months to get results, I am waiting on the results of my 2nd test). Fluorescent lights can really get to me almost instantly, and lately also bright sunlight. I seem ok on overcast days. I just got a 2nd pair of 10% NoIRS which make shopping and going out possible. I may also get the 2% NoIRS since I know I will be outside more than in the winter.

Is there a problem with the zinc oxide? I don't know what chemicals and stuff are in those sunscreens, but I had been avoiding titanium because it is a nanoparticle. Maybe the zinc is too?

Thanks,
Deb



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jcwat101
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 Posted: Mon Apr 12th, 2010 15:25

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I consider the Neutrogena a last choice option.  As is described in the sunscreen overview, it only lasts about 90 minutes (and that is with a quick heavy coating or two light coatings) and it has a lot of chemicals that are absorbed quickly and completely.

Here is more about the Kabana -- they currently do not use nanoparticles.  One would have to check on others, whether they use micronized or nanoparticles.

Currently, one needs to order Kabana:  Here are more details:

Kabana http://www.kabanaskincare.com/ingredientsdetails.htm 25% zinc oxide, has all natural ingredients.

Joyce Waterhouse


PS  I want to encourage people to discuss the sunscreens themselves (comparisons etc...) and ask questions about them in the Sunscreen question and answer thread ( http://www.marshallprotocol.com/forum11/8840-3.html ), so we can keep this thread mostly for reporting experiences with photosensitivity reactions of the type I discuss in the first two posts.

 



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 Posted: Tue Apr 27th, 2010 12:25

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Hi Joyce.  Thanks for starting this thread.  It is very helpful.

Some questions:

1) In your first post you refer often to the production of "Vitamin D" as a result of sun exposure.  Is it still thought that this will primarily be 1,25D as opposed to 25D?

2) So long as one is able to tolerate it, is it still thought that normal sun exposure will not significantly inhibit one's healing?  (By "normal sun exposure" I am thinking of uncovered hands, neck, and face as one goes about a normal daily routine...driving to and from work, sun coming in windows at work, running errands, etc.)

3) As far as the change you have noticed in terms of your reaction to sun exposure, have you noticed the same thing in regards to your exposure to flourescent lights, or does flourescent light sensitivity seem to be a different beast?

Thanks a ton.

Russ

p.s. I haven't tested it enough to say for sure, but I seem to react more when I do wear the zinc sunscreen than when I don't.  I am very sensitive to many things so perhaps I was reacting to something in the sunscreen, although it was a brand with all natural ingredients (UV Natural from Whole Foods).  Also I am much more sensitive in the eyes than the skin and I have wondered if perhaps the sunscreen reflects light off the face and towards the eyes.



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 Posted: Tue Apr 27th, 2010 15:39

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Russ,
Recent studies have shown that the skin makes a whole lot of stuff when exposed to the sun. If Vitamin D is made in the skin, it doesn't seem to be in comparably large  quantities. See, for example:

"UV radiation suppresses experimental autoimmune encephalomyelitis independent of vitamin D production"
http://www.ncbi.nlm.nih.gov/pubmed/20308557

"Agents that reverse UV-Induced immune suppression and photocarcinogenesis affect DNA repair"
http://www.ncbi.nlm.nih.gov/pubmed/19829299


Additionally, plastering metal-oxide-creams onto the skin will have an effect on the enzymatic activity in cells, at least in the surface layer. That effect is currently unknown.

We cannot know whether sun exposure will affect healing. Yet we can say definitively that as one heals -- the photosensitivity, both on eyes and skin, gradually vanishes.

It is important to understand that 1,25-D and 25-D are made in every nucleated cell of the body -- in order to regulate DNA transcription. See Figure 1 from my Bioessay:

http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf

I hope this helps,
Trevor
 

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 Posted: Tue Apr 27th, 2010 20:44

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Thanks Dr. Marshall.

So if I'm reading those studies right, sounds like sun exposure has immuno-suppressive actions independent of Vitamin D production.  Joyce indicates above that sun exposure now seems to increase IP for her.  So maybe the effect of sun exposure is complicated, with many biochemical effects, some that could be immuno-suppressive and some that could be immuno-activating, and possibly different for each person depending on their level of disease.  Is that about where we're at in the understanding of sun exposure? 

As far as not knowing whether sun exposure will affect healing, is it at least fair to say that those whose sun sensitivity has reduced and who have returned to semi-normal lives seem to continue to improve?



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 Posted: Wed Apr 28th, 2010 06:22

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Russ wrote:So maybe the effect of sun exposure is complicated, with many biochemical effects, some that could be immuno-suppressive and some that could be immuno-activating, and possibly different for each person depending on their level of disease.  Is that about where we're at in the understanding of sun exposure?

Yes, that's correct :)


As far as not knowing whether sun exposure will affect healing, is it at least fair to say that those whose sun sensitivity has reduced and who have returned to semi-normal lives seem to continue to improve?
Indeed they do :)

..Trevor..
 

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 Posted: Wed Apr 28th, 2010 07:21

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Thanks again.  :)



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 Posted: Mon May 3rd, 2010 06:36

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Hi,

This is a great thread, as there are so many different lifestyles and variations in sun exposure.  My goal is to minimize the light exposure, but when I am out in it and active canoeing or building, or whatever I often forget about it.  If I am out for too much I will get weak, and than often sleep for a day or two at a time and go at it again.  I know this is foolish, but that is my solution to the Th1 MP lifestyle.  My eyes often feel so tired, and it feels fine to take a nap in the afternoon, and a day off now and than.   Anyway, hopefully this thread will help find alternatives to IP from sun, and new management techniques that will help us all,  I will continue to follow, and thanks for the info,

                                                          Alaskan Dave



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 Posted: Mon May 3rd, 2010 14:56

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Hi, this is a great thread.   I've been on MP almost 5 years with an abx break or so every year but this last one.  My photosensitivity was particularly bad for the first year and then gradually improved (with some waxing/waning) for the next year/18 months to the point I no longer needed NOIRs indoors.   At this point,  I use 10% NOIRs when outdoors for any lengthy period of time (6 hour golf outing;  driving 8 hours in sunshine) but use prescription sunglasses at other times when outdoors for an hour or so.   I sometimes go without sunglasses for 10-30 min.    So all in all, much improvement.   I do get sun SXs periodically (sore eyes, extra tiredness,  headaches) at times and I really can't identify when I do something different (to cause them).    When those happen, I typically try and avoid the sun for a day or so if possible,  take extra benicar and darken house (I've got the faux wood blinds pretty much everywhere...so I can go from a reasonably light house to a very dark one very easily).    I do use K cream and zinc O sunscreeen sometimes when I'll be out for a long time...but I forget it a lot of the times (for long outings like golf I wear long pants, long sleeve shirts and a hat with a wide brim).   I do jog for about 30 min with shorts and a short sleeve shirt on without sun screen/k cream.    I'll try and "track" K cream and zinc O sunscreen usage and see if that makes any difference in my SXs.

I'm on my 2nd go around of MCZ (all at highest dose) and intend to stay on it for the rest of this year (making it a year this time).   I haven't "needed" to take abx breaks when vacationing at this point as the SXs aren't bad enough to cause issues.   I do however, have constant tinnitus (waxes and wanes but never disappears) and I'm not sure it will ever go away but in any event, its not a big enough deal to bother me. 

Robert


Last edited on Mon May 3rd, 2010 14:57 by Robertrr



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 Posted: Wed May 5th, 2010 21:48

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Recently, after being about one month on full Phase 3, my light sensitivity has dropped significantly.

Previously, I would have significant sleep disturbances that evening at normal bedtime.

Now, I have sleep attacks with some sunlight exposure (approx 30 min or more), still with IR cut glasses. This effect is precisely what would happen to me with increased doses of abx earlier in the protocol.

I have not been using sunscreen. Only my arms were exposed, and face.

My visual sensitivity is markedly down, my eyes don't hurt with light exposure, but still some sensitivity.

Yesterday I was out in full sun without my sunglasses, in full light. It was harsh and bright, with the sun receding in the afternoon.

I noticed after coming indoors into a mostly dark room, some interesting kelidescope effects in my peripheral vision. I can describe it as a flickering effect, something like underwater sea creatures exhibit under duress... the flicker was only in the periphery, and it was fast, something like 15 or 20 hertz.

Later in the eve, it took me a little longer to fall asleep.

My skin exposure seems to be much less sensitive than my eyes, albeit the results are much the same.

I am bumping along nicely though.

:)



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 Posted: Thu May 6th, 2010 00:08

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HI BIGDOG

This is Fred in WV.  I am not a doctor or a moderator, just a member in phase 3 but you said, "some interesting keidescope effects in my peripheral vision. I can describe it as a flickering effect",  I have these and they are called ocular migraines.  Mine can be brought on by bright lights or other things.

You do not have ther headache with these type of migraine.  I use to have the headache with these but not since the MP.  I still have the ocular migraine from time to time and my last about 15 to 20 mins.  But I have found to not stop what I am doing just keep doing what I was doing and it goes away.  I may go for months without one and then I have had 2 in a row.  Best of luck.

Remember, we area all in this together and I am pulling for us.

Your friend in Sarcoidosis
Freddie



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 Posted: Thu May 6th, 2010 01:27

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I can agree that it looks like ocular migraine symptoms. I believe that the Benicar's anti-inflammatory effects are what prevent the full headache symptoms.

However, I do get the "post-headache" migraine symptoms of "dullness" or "numb brain" feelings. I can't wait for this to get fully resolved!



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BIGDOG
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 Posted: Thu May 6th, 2010 18:33

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Just a quick note;

I do/did not experience any pain whatsoever with the ocular migraine...

I did notice I was a little more on the dull witted side later in the eve though.

:)



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Diet changed AUG09 / PH1 NOV09 / PH2 FEB10 /PH3 APR10 / OLM 40MGq6h / M100mg48h / Z125mg10d /C150mg48h / 25D 13ng NOV09 9ng DEC09 7ng FEB10 / 1,25D 18pg NOV09 20pg FEB10 / NO other meds / SUN OK
Freddie Ash
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 Posted: Thu May 6th, 2010 19:44

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HI BIGDOG

This is Fred in WV.  You said, "I did notice I was a little more on the dull witted side later in the evening tlhough".   I have notice that I am slow to think of the words I want to come out when I am trying to talk after I have these also.

I think that is because it is the brain not letting us be up to our best after we have these, because it does effect the brain and blood vessels there when we have these spells.

Remember, we are all in this together and I am pulling for us.

Your friend in Sarcoidosis
Freddie



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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-25D-7; 125-D43
Lottis
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 Posted: Sun May 9th, 2010 07:54

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Hi all and thank you Joyce for this thread. It concerns me much. :)

Russ and I had a little discussion in his progress thread about visual problems, and I just found out that there is a name for many of the symtoms that comes with the visual IP;

Scotopic sensitivity. http://en.wikipedia.org/wiki/Scotopic_sensitivity_syndrome

I noticed that a few members have been diagnosed with this, or rather Irlen Syndrome or Visual Stress Syndrome.
I recognize many of these symtoms in myself, especially when being exposed to more light than I can handle.

Last edited on Sun May 9th, 2010 07:54 by Lottis



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HTN,LVH,CHF,arrhythmia,variant angina,IBS?,fibromyalgia?salivarystones,gallstones,CPAP,|15feb-07 init. 1,25D 37,5,|25-D 7,8(15/2-07)| Ph1 30/5-08|Olmesartan alone|NoIR's|covered up|disabled|
elizabetha
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 Posted: Mon May 10th, 2010 00:56

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Hi Everyone,

I would be interested in your thoughts on my situation.  I had to take a break from the MP in January due to debilitating IP with just benicar/olmetec (in Canada).  However I am still experiencing photosensitivity.  I still feel better with all the blinds drawn and black out curtains on the south facing windows.  I am also still using zinc oxide on my face and stay covered up for the most part when outdoors.  And NOIRS.

Last weekend I ventured out for a 5 hour drive, it was cloudy and I just couldn't get comfortable, the dark noirs were too dark and the light noirs just made me feel uncomfortable neurologically.  By the time I got home, I was very very fatigued, brain fogged/spacey and just had to lay in the dark with eyes tightly shut.  The whole week afterwards has been kind of tough with increased fatigue and depression.  I had 2 days during the week at work where I had some more light exposure as well which didn't help.

What I am wondering about and I am not sure how to word it but will try.  At this point of being off benicar for about 3 months, is it possible that my immune system is still activated/working and causing inflammation?  I am just curious why I am still so photosensitive without using the benicar.  I am hoping that the continued light sensitivity might be a positive thing, some continued healing?

Any thoughts would be greatly appreciated.

With thanks.



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Post viral cfs 23 years,Depression/anxiety Rickettsia antibodies, Hashimotos Thyroiditis. Start MP Ph 1 Feb 09 l,25 OH 41.66, 25 D 29.2 Ph 2 July Min & Az - intolerable IP, Benicar only - Aug 09 Light sensitive. Noirs. MP Break - January 2010. Re
elizabetha
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 Posted: Mon May 10th, 2010 02:16

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In rereading the article on the sciene behind Vit D, I think I answered my own question...........photosensitivity is the disease process...........

Pre MP I did not have significant photosensitivity although I used to gravitate towards the dark during sunny afternoons to have naps.  And typically I felt better in the summer months than during our rainy winters.

Still interested in others' thoughts..........

thanks.



____________________
Post viral cfs 23 years,Depression/anxiety Rickettsia antibodies, Hashimotos Thyroiditis. Start MP Ph 1 Feb 09 l,25 OH 41.66, 25 D 29.2 Ph 2 July Min & Az - intolerable IP, Benicar only - Aug 09 Light sensitive. Noirs. MP Break - January 2010. Re
HeatherK
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 Posted: Mon May 10th, 2010 11:39

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My thanks too Joyce for this thread!  Most of this I just posted to my progress thread, where Joyful alerted me to this thread.

I have been experimenting a bit with midday outdoor light exposure.  (On the MP 32 months, still in Phase 2, modified , using 100mg Mino and 80 mg Bactrim Q48)

1) I was out for abt 45 min on a heavy overcast day.

2) I was out for 25 min on a bright sunny day.   

both instances, dressed the same, heavy dark clothing, hat , gloves , Kabana Skin creme, Noir 2% with 10% inserts.

Both times I had reactions 3 days later, significantly heavier IP, intolerable, miserable for abt 36 hours.... not worth the misery !!   :X   The instance after the bright sun was the worst.   Not surprising, maybe with my last  25D reading at <4.

I usually make a daily quick trip to mailbox at mid day but have decided that this summer I will be venturing out in evening light only, for any length of time, as in going for a walk.

   I did not have the eye sensitivity after these above outings that I would have experienced last year.  I do appreciate that!:cool::cool::cool: Only felt increase sensitivity inside after for abt 10 min and then settled. 

 But obviously the 3 day later reaction was through the skin, where only my face was exposed....

Thanks again Joyce

Heather 



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CFS - crashed 5 yrs+ before diagnosis and starting MP Sept 2007. (Sept 07 25D=24pg/ml, 1,25D=47.5pg/ml)~~ Mar 2011,25D-6.4 ~~ Started Phase Two Mar 4/08. Off all ABX Oct 2011. In blackout home still, wearing NoIRs, celiac. 25D=4.8 June/11

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