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Anyone Else get ill after exposure to sunlight - not just the heat

Discussion in 'Hypersensitivity and Intolerance' started by helsbells, Apr 7, 2010.

  1. oerganix

    oerganix Senior Member

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    Just a little more information on antibiotic protocols. The MP uses very low dose, pulsed antibiotics, with another drug that ameliorates some of the herxheimer reactions one can get with regular doses of antibiotics and provides some protection from organ damage, it is claimed. And it uses different antibiotics, ones that often are less troublesome. Tetracycline and doxycycline are not used. Different antibiotics work in different ways, but I don't remember the exact details.

    There is also another protocol called The Roadback. I am not really familiar with it, but I've heard it also uses pulsed antibiotics.

    I'm not saying you can do either, but others with your problems have been able to do antibiotics this way, so it might be worth another look, and a read of other patients ways of dealing with your same symptoms. You might need to treat your gut and IC problems first, to the extent possible. And anyone taking antibiotics needs to reintroduce the good bacteria needed by the gut, as in yogurt and kefir, on a daily basis.

    Re: what others are saying about vitamin D. I have noticed that it is the latest 'miracle' supplement to be hyped and boosted by the supplement industry. Many of the studies proclaiming a need for it have been done by the companies that manufacture it, or by researchers paid by those manufacturers. No bias, no spin there! Some of them even state conclusions that are inconsistance with their evidence, since many people, including doctors, only read the conclusions. It is stored in body fat, so tests of D in circulating blood can be misleading as to how much you actuallyhave in your whole body.

    The supplement sellers periodically hype one product or another as the latest miracle. I remember when it was vitamin E. Had to have it in everything, including hand lotion, although the research had shown that vitamin E in the diet was an antioxidant and good for the skin, but on the skin it had a negative affect when exposed to the sun. I still see it in topical creams and lotions.

    Remember when vitamin C was the magic bullet for every illness?

    The argument that these supplements are cheap so why should they be promoted overlooks the "loss-leader" aspect of marketing.

    The loss-leader is a product that sells at cost or below cost, designed to get the customer in the door, or onto the website, so that other more expensive products can be pitched, or the same product can be sold in 'magic' combinations with other, more expensive supplements.

    Much of the recent flurry of interest in vitamin D is driven by marketing, not concern for anyone's health. Get your noni berry juice, your chia seeds (this cheap "chia pet" seed was recently being sold for $50/bottle + shipping, in an email ad to me...enough for one month, or 10 chia pets, which ever comes first!), your flaxseeds, your aloe vera juice at $15/quart...include this in your purchase of vitamin D and get....free shipping! Act now, supplies are limited, limited time offer....well, you get the picture.

    As long as they state their FDA disclaimer in small print on the website, that none of their products "are intended to diagnose, treat or cure any illness or disease", they can then go on and make those very claims, often in roundabout ways. Ad agencies have long known that the more times someone hears, or reads, something the more likely they are to believe its true. So they bombard the internet and the blogs and the health food stores with 'informative' stories and studies, many of them rewritten and simply copied over and over. Likewise the phony testimonials.

    Even if you can't do antibiotics, you can listen to your body and avoid sun exposure. Use of zinc-containing creams on the exposed parts, like your face and hands, covering up, avoiding going out in the daytime when possible, using the NOIR (no-infrared) sunglasses the MP protocol promotes, using hats, and in my case, an umbrella when I go out in the sun, can also help you avoid overexposure to the sun. There is even a type of clothing fabric that offers more exclusion of the sun's rays...expensive I hear, but to some sufferers, it makes the difference between going to work or staying home. Where to find it kinds of info are also available on the MP site, even if you can't do the antibiotics.

    Good luck and take care.
     
  2. oerganix

    oerganix Senior Member

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    Back atcha! Been thinking the same about you, and never said it. Saying it now!
     
  3. serenity

    serenity Senior Member

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    i get very sick if i spend too much time in the sun. i avoid it.
     
  4. Mark

    Mark Acting CEO

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    ETA: While I was posting, oerganix has already put it better and simpler. But since parvofighter's posts went over the top IMO - and I have read through more now and understand better why - I still think I need to explain where I'm coming from. And I really must add that the comments about practicing CBT on forum members, ethical and legal concerns, and deliberately trying to toy with patients, are completely over the top. From where I'm sitting, those comments are absurd. Just absurd, and not worthy of you parvofighter. I can see where you're coming from, and I'm very sorry to have provoked you into that reaction, I have taken the reasonable parts of what you say on board, but your reaction was far too strong in my view.

    Parvofighter, I want you to know I'm taking what you say seriously and I will try to take your anger on board and qualify my comments more in future. But I do need to express where I believe this fault line lies, hoping that I can help take the heat out of some of these arguments within the forum community.

    I think the clue to these arguments lies in the phrase "ME/CFS". ME and CFS are very likely separate conditions. In the UK the diagnosis itself is a "waste basket" diagnosis covering a wide range of conditions that aren't understood properly. All of us here presumably have in common one thing in particular: that all we are offered is CBT, and that the genuine nature of our physical illness is cast in doubt. But in the absence of a full scientific understanding of all these conditions, and of conditions like IBS and other ideopathic conditions similar to our own, we just don't know how many different conditions are involved, and how they are related, if at all. It is entirely likely that there are two, or probably more, completely different conditions lumped together in this wastebasket.

    I post on the basis of my experience. I describe my condition, my attempts to resolve it, and try to pass on what has been effective for me. Whether it is relevant to someone reading, is up to them to decide. Where I have mentioned experiences that are different from other people's, someone will be quick to put up another point of view, and that's absolutely fine. The reader can see the alternative angles and get a sense of what is relevant to them. It's quite clear that some posters here find sunlight can sometimes be helpful (and I too have been through times when it was the reverse), and that other posters find sunlight is very damaging. I think the forum needs to be able to operate on the understanding that there are people here with very difficult realities, but that we are all genuinely trying to pass on what has been helpful to us as individuals.

    What works for me may not work for you. And vice versa. That shouldn't need to be a cause for friction, we should be able to discuss those differences in a calm atmosphere and learn from each other.

    I don't think my comments about occasionally exposing myself to triggers that I know make me ill ought to be so controversial. It's something I have been trying quite recently and it seems to be helpful at the moment, but it's not something I could have contemplated a year ago. I would never try to push anyone to do anything that was causing extreme discomfort or danger, and I don't think my post reads that way. I said I sometimes try to do that, as far as I can bear (I should have said, stopping if the discomfort becomes troubling, that was indeed posted in haste, I accept that point) , and I consider my body's response and adapt my strategy accordingly. Anyone is free to judge for themselves whether that is feasible, and I should have made it clearer that this is not something I do frequently, but something I try occasionally and gently, with caution and self-observation. As you rightly say, it is essential to listen to your own body and not to drive yourself hard. But at the same time, I am merely suggesting that occasionally and carefully confronting those sensitivities when you are able to might be helpfulin the long run. I could be wrong. I am still experimenting but so far this has seemed quite positive in reducing my sensitivities. It is a more subtle approach than I described, I am sorry if I was't clear enough.

    If complete 100% avoidance of anything that sets off negative reactions has led to a gradual improvement in your condition and helped you on the road to recovery, then fine, carry on with whatever works for you. If that path has led to increasing levels of sensitivity to more and more triggers, than I want to gently suggest that if it's not going to cause you significant immediate harm then it's sometimes helpful to your body to try to do what you can. This is not the same thing as chucking patients on a GET treadmill or even the same as gentler approaches like pacing. It is more about occasional experimentation to check whether your understanding of what is good or bad for you as an individual really does still hold good. As a general policy, extreme measures to avoid harmful triggers remain essential.

    Incidentally, for me, unknown organisms living in cloth and fabrics of all kinds cause a severe and painful reaction, such that I have not slept in a bed for 3 years now (but on a leather sofa) and I have improved dramatically in that time. Since it took me 10 years to even realise that this reaction to bedding and clothing was causing my fatigue and poor sleep leading to a range of secondary CFS-like symptoms, and required Dr Myhill's treatments and lots more hard and expensive work to get to the point where I was well enough to spot the subtle differences provoked by those triggers, I can't help wondering whether there is a deeply tragic vicious circle involved with those people who are bed-bound. I know that is a hard thing to suggest and to hear, and it's entirely likely that my condition and experience is a different one to yours, but it is my experience and I pass it on sincerely. Not out of a desire to cause distress but out of a sense of responsibility to share that experience.

    As an example, I have been completely off wheat and gluten for several years now, and that and other measures have 90% cleared up my IBS problems. Every once in a while I break my own rule to see what happens, and after many years of wheat abstinence I am now finding that I can tolerate small quantities without adverse effects, indeed there are positives to reintroducing some things in small quantities. I pass that experience on in the hope it will be helpful to some people. Not to everyone, but to some people.

    So that is where I'm coming from. However, I really do take on board that in my haste and enthusiasm, and also sometimes from lack of time to re-check my posts thoroughly, I have sometimes posted too quickly and made a sweeping generalisation. I think it's fair to say that my use of the word "we" was inappropriate there, and that I overuse "we" when "we" are not all the same. I was unintentionally including myself and everyone else in a "we" that probably isn't valid - "we" are a mixture of different conditions. You are right that what I was saying should have perhaps said "some of us". I have done the same thing before elsewhere, and there are a few posts recently that I've thought I wished to clarify what I said, based on people's responses, but in the end it didn't seem a necessary and high priority because, inevitably, other people had already stepped in to give the view from another standpoint.

    - "Sunlight is good for me"
    - "Sunlight is bad for me"
    - "I can now tolerate small amounts"
    does not need to be a charged and emotional political argument
    and you don't have to experience it as an attack on ME patients, who are well able to determine which of the two applies to them, and can decide for themselves which approaches to try. I make no attempt to force any of my experience on anyone else. I write openly, honestly, and from the heart, based on my experience of 15 wasted years of chronic illness, and in a desire to both learn from others and pass on what I have learned myself.

    I will be more careful in future to qualify what I say by making it as clear as I can that this is what works for me and it may not work for everyone. But I don't think that people posting experiences like mine deserve to be attacked for it. It makes me personally very sad to think that I have provoked anger in someone else by what I've said, because that is the last thing I want to do and because I know how self-destructive anger can be - even without an understanding of how stress hormones activate XMRV. That's why I practice meditation as well, increasingly so thanks to helpful suggestions on this forum - which I have tried, and found to be helpful, and so continued. The forum's a giant buffet, people aren't expected to have the same experience, and we all have to be responsible for taking what is helpful to us and rejecting what isn't.

    Perhaps if you are worried that my words or those of others might be dangerous to other vulnerable patients on here, then you are taking too much responsibility for those people in a way that might effectively be rather patronising to them? If you are able to know that the approach I take is definitely a bad idea for you, perhaps they know that as well.

    As regards CBT being practiced on this forum, I don't really have a clue what that refers to, but I find it very hard to believe that the claim makes any sense at all. I'd rather draw a veil over that one because I don't know where to begin with that without coming across as insulting.

    Can I make one final plea to people who become angered or upset by something they read on this forum? Please, if you have a complaint to make, could you first consider PMing the person(s) concerned and putting your concerns to them, calmly and respectfully of course. If there's anything you want to know about me and my condition and experience, you only have to ask. If you want to make the points you have made, you can do so in PM conversation or otherwise, and I would be more than happy to chat with you parvofighter because I have great respect for the contribution you make and the wealth of information you post here. So please, everyone, if you feel yourself getting riled up, try to address the issue calmly by PM first, then by reporting posts as necessary. I haven't seen any posts reported for moderation that would suggest the problems you are indicating, so it seems as though these concerns are often building up and building up before a sudden release of anger. I think the vast majority of people here would prefer to avoid such friction as it's stressful for all of us and does none of our health any good at all.

    I felt this was a serious enough issue to address with a lengthy post, so that's what I've done, but now regretting it - when am I ever going to get chance to work on that Panorama petition I wonder? :( If only we could deal with these controversies in a quicker and calmer way, I reckon the rest of our work would be a whole lot more productive. [Sighs...]. Wish I had the talent of someone like oerganix to put these things more succinctly. So let's all try to get on the same page and move forward together - please? I'll do my best, anyway...
     
  5. jace

    jace Off the fence

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    I was gently improving on Tuesday, it was such a lovely day, I sat out in the sun with my book for half an hour. Wednesday I couldn't crawl outside. Thanks Parvo for your brilliant post. It may well be that I am sun intolerant too.

    I'll keep an eye on it. How lucky we are to have so many fine minds to show us the way, if it sounds and feels right for us.
     
  6. helsbells

    helsbells Senior Member

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    I think its a weird one because it sounds so counter intuitive. Everything in our society, partic in the UK because we aren't used to all year round sunshine suggets its a boost, a tonic even poetry and songs are written with it either as a metaphor for happiness or suggesting it is in itself, synonomous with bliss LOL So I really soldiered on, not I should hasten to add because I was CBTing myself just because i couldn't quite take it on board that something so natural and jolly could be making me ill. The upshot is it is deffinately one to watch everyone :)

    regards
    Helsbells
     
  7. DavidJ.

    DavidJ.

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    yes, i have also been sun-intolerant in the beginning and i found an explanation for it. just google sun and herpes and you will find that even healthy people are complaining about herpes outbreaks after exposure to sunlight because sun or stress trigger outbreaks . and as we know, most people with cfs also struggle with herpes virus infections. ebv and cmv and hhv-6 are all herpes viruses ...
     
  8. flybro

    flybro Senior Member

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    I miss the sun so very much.

    I was a sun worshipper I lived in Malta a small island in the med as a young child and spent most of my time at the beach or lido.

    I worked as a gardener and loved every minute of it. When I wasn't working I was out in the woods or down the river.

    I always detested the cold and still do. Now though I can't tolerate the sun either.

    I have been in the sun 3 times this year, once for 15 minutes at 5pm, once for 15 minutes in my own back yard at 11am, and once for an hour and a half between 3 and 5pm. It is spring here and the the weather is warm but fresh.

    Three times I took a turn for the worse, started with achey fluey feelings, itching, sweating, dizzy, and visual floaters by far the worst and most painful symptom is the sinus pain. My whole face and ears hurt. Sound, light, motion, moving my eyes all hurt like hell.

    When this happens I can do little more than lie still in bed in a darkened room and wait for it to pass. Other times when I have sinus pain I find that sinus meds can help, but when its caused by the sun the meds dont seem to work. On all three occasions I wore a baseball cap and I have had prescrition reactorlite glasses since my teens for light sensitivty.

    I'm also starting to think that the sun maybe agravating IBS.
     
  9. Mark

    Mark Acting CEO

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    After reading the many posts here and elsewhere, one possible pattern that seems to emerge is that those people for whom persistent and recurrent viral infections are a prominent feature seem to be far less able to tolerate even short periods of exposure to sunlight. Jace, I'm really sorry if my suggestion to experiment to confirm triggers occasionally carried an insufficient health warning and caused you a setback. I hope you feel that the long-term value of the extra information gained from the experience justified it to some extent. It is all a delicate balancing act and avoidance of triggers is the most important thing to emphasise, so I'll try to be more careful in future. I still think there are many of us (perhaps those with the equally weird "never catch colds" version) who can reach a stage where we can carefully reintroduce some substances or activities that were previously harmful. Indeed I know that to be true for me because I cut out evertything I could think of in one go so I can't be sure which triggers really are still important for me. I think the distinction between these two experiences just highlights a practical dilemma that every individual has to negotiate based on their own circumstances. Everyone needs to be very careful and self-observant, I think that's clear, and for most people, sunlight will probably be a problem. Actually, it would be good to have a poll on this question...
     
  10. helsbells

    helsbells Senior Member

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    That sounds absolutely idyllic and your loss makes me very sad.
     
  11. helsbells

    helsbells Senior Member

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    Thanks DavidJ I think you are onto something
    I can only tolerate valtrex then only one or two a day and not sure thats going to be enough. Once moved house (groan) in a couple of weeks will try again and see if the little doses could make a difference. Even to the light would be soemthing.
     
  12. jace

    jace Off the fence

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    Mark, I was in the sun on Tuesday, and it was yesterday (wednesday) that I found this thread. So, nothing to do with you. Actually, it might have been Monday I was in the sun. Time is playing funny tricks with me this week.

    Before I read this thread, anyway. Thanks for the heads-up, Parvo, Hels, Mark and Oerganix.
     
  13. Nielk

    Nielk

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    I feel much better when it's sunny. Eventhough I have very high titers to many virals.
    I am vitamin D defficient. Maybe that's the reason.
    On the rare occasions that I can go outside and sit in the sun, I feel that it is therapeutic for me.
    I feel better in the summer as opposed to winter.
    This just shows how different we all are.
    By the way, I suffer from constant migraine headaches and artificial light and noise bother me but not the sun.
     
  14. serenity

    serenity Senior Member

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    i'm listening to Parvo, i am so glad he provided this info. i always wondered why i got so sick after being in the sun.
     
  15. tymewarp#9

    tymewarp#9

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    WOW: My jaw is dropping, because yet once again this forum has shown me that I'm not completely nuts, afterall! (I know this thread has been around awhile, but I felt compelled to chip in.) I KNEW I felt worse after being in the sun, but got the old 'furrowed brow' response from family/friends. Heat from any source feels good on my head/face/neck, even when it's 100 degrees out (another weird thang; anyone else relate?). There are SOOO many variables, but I think I've experimented enough with the sun to be pretty sure it isn't good for me (even tho it initially feels wonderful). Bummer. Also, I'm one of those who rarely gets sick, but when I do it's usually pretty nasty. My rare colds/flu nearly always occur in the summer! One other thing I wanted to bring up: somewhere I think I read that VitD, like some other antioxidants, can cause release of heavy metals from ones bones, then recirculate it to possibly redeposit in the brain?(!) This scares me because I have felt like %@#! after taking some of my supplements (extra nervous, grumpy, tense, anxious etc). Sorry if this has already been addressed somewhere before; I wish my brain & eyes worked fast & efficient enough to research ALL of this! thanks, everybody -t.
     
  16. tolduiwuzsic

    tolduiwuzsic

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    love the sun but it makes me so sleepy and tired....also causes rashes
     
  17. Adam

    Adam *****

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    I am significantly better in the summer. Post CFS/ME I get prickly heat rash so have to cover up a bit and take anti-histamines, other than that I am just so mich better. I can walk further. And on the three occasions I have been on a Mediterranean holiday I was even better still.
     
  18. richvank

    richvank Senior Member

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    Hi, helsbels and the group.

    You might also consider porphyria as a possibility. Sun exposure can make a person who has porphyria very ill.

    Best regards,

    Rich
     
  19. I do too, if bad it may be a condition called 'sun poisoning'.
     
  20. CBS

    CBS Senior Member

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    Count me as being amongst those who get very ill when exposed to the sun. It's not the heat so much as the sun. For instance, I've been in an air conditioned car on a long trip and noticed that I was starting to feel very ill. I moved to the other side of the car (we were heading north and the sun was to the west) and within 20 minutes started feeling less ill. On this particular return trip, it was cloudy and no issues. Predominantly a strong feeling of nauseousness /severe headaches. It happens all the time.

    I just stay out of the sun.

    And thanks to Parvo for such a thorough response and heartfelt concern. Personally, this is not something that I can just work through with the benefits exceeding the costs. After 16 years with CFS, I have grave concerns about the cumulative impact of trying to look beyond the particular discomforts of the moment. In my case, that is a strategy that has completely and utterly failed.

    (FWIW - in a former life I raced bikes in the summer and in the winters I spent several days a week in the back-country digging pits for the local avalanche forecast center - I know what it's like to push through physical discomfort).
     

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